Ranting, despair, sadness and the likes.

[Echo]

It's been a while since I visited the forum but I find myself in a dark place where I just don't know where to turn anymore. The internet is full of contradicting stories. The doctors all say different things. The most annoying thing is all is that my doctor doesn't seem to know what he's talking about half the time. Well he admitted at this point that he's out of ideas and he's referring me to another hospital but they have a nice long waiting list. So now I'm stuck in the grey zone.

Meanwhile... meanwhile things go from bad worse. The attacks sneakingly become more frequent.. they become longer.. they become stronger. The past few weeks my right eye is permanently bloodshot and under pressure. The shadows are always there. A sense of normal is long gone.

I'm officially chronic and the government doctor had one look at me and said.. yeah.. no you're not gonna be expected to work. I don't get out much anymore, the attacks are too frequent and too long and when I do have a good day... well I'm just too scared to run into a trigger or being too far away from the oxygen tank. Not that the oxygen helps much, despite the mask you guys recommended. It still doesn't abort the attacks.

Is this normal? That these attacks slowly get worse and worse as a few months pass by? Does anyone recognize this? We've tried several meds already. Verapamil, steroids, lithium, melatonine, topiramate... oh the topiramate. If anything that stuff seems to have made everything 10x worse. Maybe that's just a wicked coincidence but ever since I tried topiramate (Ive quit that) everything got 10x worse for me.

In all honestly, the only thing all these meds have accomplished so far is make me ill and give me side-effects to endure. Everybody keeps telling me to try the shrooms. You're dutch so it's perfect, legal and everything, try the shrooms! But surely I'm guaranteed a bad trip when I'm in this bad state? I've never touched drugs like that in my life. Does stuff like that even work on a chronic?

I don't know... It sucks when the hospitals put you on these idiotic waiting lists... when your CH specialized doctor looks at you and admits he has no idea what to do with you anymore. Meanwhile the CH demons are just getting stronger and the path they're on isn't a place I wanna go...

[CHfather]

Echo, I'm so sorry to read this.  Is indomethacin one of the drugs you have tried?  I ask because while it doesn't work with CH, it does work with two conditions that are very much like CH, and which include the symptoms you have described.  We have seen people here who were misdiagnosed as having CH when they actually had one of these other conditions, which are very rare.  Also, these conditions are not helped by oxygen, while CH usually is (and they're also not helped by shrooms, so you might as well rule them out as part of the process of deciding about trying shrooms).  One is chronic paroxysmal hemicrania. You can read more about that here: http://en.wikipedia.org/wiki/Chronic_paroxysmal_hemicrania.  The other (which seems less likely to me) is hemicrania continua, which you can read about here: http://en.wikipedia.org/wiki/Hemicrania_continua.

I ask about the indomethacin because it's a kind of diagnostic test of whether you might have those conditions, so you could just try it and see whether it helps. 

Others will answer you about the shrooms.  I have opinions, but I'm not an expert.

With much hope that things improve for you.

[ThatHurtsMyHead]

CHFather,  We need to clone you.  Love that you help so many people.  Just reading your posts sometimes makes me proud to be part of this community.

Echo,

Sorry to hear you haven't improved.  CHFather's posts are generally spot on.  If you do decide to try fungus (and I'll deviate from CHFather and say "Why not see" if it helps.     The #1 thing I've learned about the fungus is Set and Setting (guess that's 2 .  I'd be pretty confident you'd be fine with a threshold dose if you have a friend (or 2) over to just hang out and have some fun one evening.  Make sure you're in a comfortable place, with people you trust.  I try to make some fun out of each time I dose.  I have a ritual that a true friend helps me with (my sitter).  We go to the grocery store and get some snacks and gatorade.  Snacks for just after peak when everything is all-good.   I've found fresh fruit is the BEST.  Pineapple (nicknamed Cosmic F-ing Pineapple).  Make sure your phone is OFF,  The music is ON (something tripppppy).  Don't plan on trying to do anything for a few hours, but just have some fun. 

Please check in here often if not for you, for us.   I'd like to hear you feeling better sometime soon.  Even if it's small spurts of feeling good anything can help sometimes.  I'll be happy to open my can of bad humor if that'll help any

PFW,

J

[Ajax]

I admit I know nothing about the other two possible diagnoses.  One thought might be Ketamine.  It works on CH and if you try it and it doesn't work you might be closer to an answer of what you have.  It is far less aggressive that shrooms.

I would however dose today if I was you.  Not sure what the downside is if you are fighting this hard.  Listed to the advice above if you give it a whirl.  We are pulling for you!

[Bejeeber]

Echo, really sorry to hear of this terrible escalation. Morphing and worsening of symptoms is unfortunately common enough with CH.

Reading the above replies to your post restores for a moment at least my admiration for the potential of the human race  , all good stuff.

My impression of the CH experience in The Netherlands, from those of you have reported on it here, is purely anecdotal, but it goes like this:

1) FANTASTIC that psilocybin, a long term, preventive much more effective than any prescription drug, is actually available legally in the form of truffles (!).

2) Good support system for chronics unable to work.

3) HORRIBLY ARROGANT AND IGNORANT DOCTORS

So anyhoo, regarding busting and fear of bad trips, lots of CH'ers here have reported a tranquilizer taken while dosing - either valium or xanax - is a wonderfully effective bad trip preventive. It's exactly what is given to bad trip sufferers in emergency rooms. That's something I would do if I were you, along with J's set and setting ideas (I'd also be seriously considering CHf's thoughts on looking into the alternate diagnosis of hemicrania continua, and Ajax's mention of ketamine).

Can a chronic still be helped by busting? Yes, but it will likely take more doses than it would for an episodic, and full busting success can be more challenging for those in high cycle.

[Tony Only]

I think it's also important to look in the past, how we got from there to here. To my eyes, the absolutely worst things from those you mentioned capable of altering our condition worse are verapamil, steroids, lithium and topiramate. After years (for decades for some) of these pretty much never results in anything good. Melatonin is good though it does not help us all since not all of us have funked up melatonin production.

If it was me, I would detox from the meds asap, that alone may bring improvement though slowly. To support getting better wonderful option would be Vitamin D regimen and if able to reach medication free state also Liquorice root protocol.

Busting certainly would be more efficient, healthier and wiser option over the meds you have been on looking at it from any perspective. But like pointed out, set and setting is important and when in cycle we are rarely happy and calm state of mind. Then again, treatment doses are rather low, and when working from small doses slowly upwards I would be amazed if one faces a "bad trip".

Some prefer RC seeds as their busting material, since all the effects are far less than with mushrooms. But when seeds are not "enough", usually severe chronics etc. then the only option is mushrooms.

I can't recall a single patient with "Morphing and worsening of symptoms" by the way who has not been on prescriptive medication. I think it's our dear meds that do that in the long run.

Take care of your body, choose treatments that fortify it and not work against it. My best regards to you.

[razorPP]

hello echo, from one chronic who calls it applied science, the docs mean well, but.... have you tried the D3, took me 4 weeks to see results, it lowered my daily pain level by a third. the seeds helped lower it even more, I like hbwr, just a few seeds, you can find a dose you like, no trip needed for results, you said, you don't do drugs, this is medicine, medicine from mother nature, something our body reacts to without side effects, just wishing you a day with less pain, stay strong, and stay connected at CB, read and you'll find something that will help you,  peace

[razorPP]

ps,i like pic of your dog, mine stays glued to me during a ch. she thinks she can lick it away, good ol dog kisses 

[DrTy2]

Hello Echo, I am quite sorry to hear your story, I guess that ending as a totally unresponsive chronic is the nightmare of all CHs around the world.

Yet, as CHfather I suspect your headache may not be a CH, so please help us better understand your condition.

Can you tell us  how many attacks you have during a given day?

What's the lenght of a single attack? 10 mins, 1 hour or 12 hours?

Do they strike you at night, while sleeping? And do you sleep well or you have insomnia/frequent awakenings?

Can you define a pattern, ie all attacks striking at the same hour each day, every day?

Do you also have secondary symptoms like vomit, shivering, tachy/bradycardia, nausea, vision loss, darkened areas in your visus (like looking through a window), black spots or small lights?

[Tony Only]

I got the stronge sense of morphed cluster headaches when I read Echo's post for the first time, been through that myself. I was medicated for roughly 20 years each year medications either raised or added.

First years: Episodic, around 50 hits annually. Able to function at least some level during attacks, except the most severe ones, overal attack duration from 30mins to 1 hours, 1½ hours max. Cycles lasted for weeks, most attacks during sleep.

10 years later: Episodic, around 300-500 hits annually. Unable to function at any level during attacks, the pain volume much greater, duration from 1 hour to 3 hours (max). Cycles lasted for months, daily and nighttime hits equally.

20 years later: Chronic , around 1500 hits annually. Attack severity reached maximum that I have ever experienced, during hits unable to even move my limbs, lying on the floor until losing consciousness. Overall attack duration 2-4 hours, 5 hours maximum. Hits had lost all the regular schedule they had when CH began, I could be hit anytime, anyhow.

My morphed CH could not have been possible without ridicilously dangerous continuous prescription medication. Ever since got rid off them, first experienced the longest pain free stretch I have ever had (with busting) and now CH is very, very slowly, day by day, going back to it's "original form".

I'm thinking it could be something else but could very well be just medication morphed clusters.

[Echo]

Thank you so much for all the supporting messages! I'll try to clear things up best I can.

@CHfather

I haven't tried that yet but noted! It's worth a shot, even if it just ends up eliminating similar conditions.

@ThatHurtsMyHead

Humor is always welcome!

@Ajax

Thanks for the suggestion. I'm not familiar with ketamine (had to look it up) but from what google told, it sounds scarier than shrooms or RC seeds. Maybe because of the words party-drug kept popping up.

@Bejeeber

1 True

2 True

3 Funny enough.. my "ch specialized" neurologist has managed to teach me an awful lot about MS during out consults (No, I did not ask him to). Which seems to be his true passion. Sigh. But at least he was very cooperative with anything I wanted to try. Definitely worth asking if I can get some sort of calming drug before the mushrooms cause I'm definitely going to be anxious about either getting a bad trip or attack. Hopefully the doctor will understand.

@Tony Only

The only thing I'm on right now is verapamil (4x120mg) and melatonine to help me keep a regular sleep pattern. As it happens, I take vitamin D cause I don't get out much these days but thats about 10micrograms a day. I've been signed over to a different hospital and meeting my new neurologist on the first of july. I'll put him to work right away then!

Detoxing from the meds is not possible in its entire. I try meds for roughly a month and if they haven't worked then we quit and move on to the next thing to try but the one consistent thing is the verapamil. They buys me a discount on the pain intensity but not without serious side effects. If I don't take the verapamil.. if I miss even one dose, there's hell to pay, even more so than usual. Thankfully that's one phrase I don't have to explain to other CH patients. But I don't dare to let that go. Can I be on verapamil and still try the shrooms?

On your second post: Yeah I had periods of intense headaches around the eye for (roughly 3) years already but these periods were short and infrequent. Till last august when suddenly those headaches came to visit again only never left. Now not only don't they leave, but slowly have been getting worse  over the course of the past year.

@razorPP

It gives me great hope to hear it confirmed from another chronic that this Vit D3 thing is worth trying. So it doesn't decrease the amount of attacks but it does lower the pain? The seeds sound nicer as well. Preferably I can use something that doesn't make me trip. My dog stays glued to me too during attacks.

@DrTy2

You said it. That is exactly my worse fear, that this keeps getting worse and worse and the meds work less and less.

To answer your question:

I have 5 attacks a day on average.

Each lasts 3 hours lately (they used to last around 1,5h)

They strike me day and night. They used to wake me up at night but that happens less often now that I use melatonine and simply sleep less hours. Every day always starts and ends with an attack in any case.

They strike me around the same time every day, pretty much like clockwork, all of them. Not to the minute but within the 30min timespan.

No vomiting, no shivering, no auras. I do get a runny nose and the sensation as if I had a basketball thrown against my nose and a tooth ache and or ear ache while the pain in and around my eye hits. My eye becomes watery and bloodshot and the eyelids droop a bit. I don't know about bradycardia (did I spell that right?). It never occurred to me to measure my heart rate. I get very restless and start pacing till a certain pain level where it becomes a matter of sitting and rocking and clutching the oxy mask with 1 hand and a rosary in the other.

Again, thank you all so so much for the supporting messages. It put a smile on my face to read the messages and hope in my heart again to think that maybe it could be as simple as a vitamin in the end and maybe things can be better within a matter of weeks. Maybe. There has to be something...

[Tony Only]

I'd say you're on a path that will eventually lead to success, finding things out. Take some time and read up on Vitamin D. 10 micrograms will not help. I take 10,000 IU (250 micrograms) daily, even when pain free. Vitamin D has been by far the best CH managing option for me, to keep even those shadows for me. When I last was in active cycle I was on double dose and people take even large "loading doses". But that Batch's thread I linked above will tell you everything you need to know and if there still is questions that's the best man to ask from. The idea is to have Vitamin D level in your blood (serum concentration of 25 - Hydroxyvitamin D, also called 25(OH)D) to around 60 to 110 ng/mL (150 to 275 nmol/L). Levels can be measured with simple blood test. Here is a converter you may need at some point.

Verapamil, being a calcium channel blocker may interfere to some extent with Vitamin D regimen. But it does not block busting (or even interfere I think) like triptans, steroids etc. so you're good to go.

Wishing you the best and success

[CHfather]

Verapamil, being a calcium channel blocker may interfere to some extent with Vitamin D regimen.

This is Batch's advice (from the file Tony linked to) about D3 and verapamil: >>In order to minimize a possible interaction with calcium that may limit verapamil effectiveness, separate the verapamil and calcium doses by at least 8 to 12 hours.  Discus this regimen with your PCP, neurologist, or cardiologist in order to work out an optimum dosing schedule.<<

As Tony said, "Batch," the person who developed and refined the D3 protocol, is extremely generous with his time. Not only would you not be bothering him if you contacted him with any questions you have, he will actually appreciate your contact.  He is very committed to helping everyone with CH.

[Bejeeber]

Can I be on verapamil and still try the shrooms?

My take on this after viewing numerous discussions on it over the years is that yes, you can.

A couple other chronics have reported partial success while on the verap, enough to get them off the verap, then full busting success once off of it completely, so it appears to me as if verap could be just a partial busting inhibiter, but not a deal killer.

I have 5 attacks a day on average.

Each lasts 3 hours lately (they used to last around 1,5h)

Oh s**t!! Pardon my american, but WTF?! I know what one 3 hr attack in a day is like, but 5 such attacks.....that's just an unimaginable horror to me that is not put-able into words, so I guess I'll stop trying, because they''re all coming out profane.  :'(

There has to be something...

I think this is actually very true - whether it's as simple as a D3 regimen, a truffle growing right there at your feet  , occipital facet nerve blocks, etc., something will work.

[Ajax]

Bejeeber it made me sick to my stomach when I read it... I was lucky enough to get the 3 to 4 hour kip 9+ but almost always only once in a day and then I was complete junk afterwards. 

Echo pick a poison/cure and get going!  a bad trip would not scratch the surface of a CH especially a high KIP!  I have seen many first timers trip and never seen a bad one.

You can and will get your life back.  These guys KNOW what they are talking about.

[DrTy2]

Well, it looks like it's definitely a CH. Yet, you being a female, you may react positively to Indomethacin, as CH correctly suggested.

Some theories say that the Paroxysmal hemicrania is a "female" version of the CH, and overall I can tell you by direct ward experience that indomethacin works much better on female patients rather than male ones, so I would give it a try.

All in all, Indomethacin is a very safe drug, you can try a 100mg suppository to abort attacks or just reduce it, without significant interactions or side effects with your other prescription.

Also, Verapamil + MM is also a quite safe combination, and from anecdotal and personal experience, they both synergize very well to kill out clusters and stop them in their tracks. Don't be scared about MMs anyways, your experience will almost surely be very, very pleasant. Bad Trips are usually a danger for people with psychiatrical issues, if you're mentally healthy I guess my medical advice is to try them. Given your current condition your overall risk/benefit ratio is vastly unbalanced towards the "benefit" side. 

Keep us informed anyways, fellow CHer, for any other medical/pharmacological doubt, feel free to ask me here in this topic or through private messages.

[Tony Only]

In our finnish group (350+ members) mostly females seem to have additional headache condition (usually some form of migraine) on top of cluster headache. When they have treated their clusters with busting, the other headache types have either disappeared or dramatically decreased as well.

[DrTy2]

In our finnish group (350+ members) mostly females seem to have additional headache condition (usually some form of migraine) on top of cluster headache. When they have treated their clusters with busting, the other headache types have either disappeared or dramatically decreased as well.

I had the same experience, even if I am male. I suffer from both CH and migraine: busting seems to have been even more effective for migraine than for CH itself.

I usually endure 2-6 migraine attacks monthly, even more frequently when I am "near" to a CH (ie. one month before, and one month after the cycle).

With a single full shroom dosing, I can reduce the attacks to 0-1 monthly, for 1-2 months each time.

[Tony Only]

I had the same experience, even if I am male. I suffer from both CH and migraine: busting seems to have been even more effective for migraine than for CH itself.

I find it odd that at least in here (Finland) there seems to be no "alternative" treatments for migraine similar to busting cluster headaches. If treatments for CH work so well for migraines as well, maybe they could be refined somehow to help people even better. For what I know, especially the older migraine patients often are heavily medicated with little relief to actual condition.

[Echo]

Thank you guys for all your wisdom and support. It truly helped me hang on to the hope when bad turned into worse.

Time for an update. I have good news and ... well I could use some advice on the bad news.

First: the good news. For whatever the mystery reason was that my attacks increased so much, it seems they have retreated again. No not remission but... different in a better way I suppose is the best way to phrase it.

Things got a little better for me when I increased my verapamil. The pressure still comes and goes all day but it's as if the attacks are blocked and only manage to get through some of the time, rather than the full hours long.  Then I had a few miracle good days where I barely had any attacks at all for about two days.

Decided to lower the dose back to 3x120 (due to side effects) and oh my gosh. Normally missing 1 dose would be enough for any discount on pain to go away but it's still on a managable pain level most of the time and still shows the scattered attacks as I described before.

Also took on the vitamine D story. I have an appointment with my GP next week to have that checked out.

Words can't describe how relieved I am. I'm still far from healthy, granted. But the horror show halted at least. Hopefully it was just an unlucky bad period that won't return anytime soon. Whatever the cause is, I'm glad things went back to normal a little. Life ain't easy but at least this is a level I've become used to handling and have a few hours in my waking life free to enjoy life again.

Onto the maybe bad news. I'd really appreciate input on this one cause I'm not sure how to handle it. It seems my doctor has dropped me entirely but also made some "mistakes" in the past.

For example,

- he claimed verapamil and lithium do not interact and gave me both at the same time without keeping an eye on me. Now I've looked up some pharmacy info and see those two listed as interacting on most of the informative websites about verapamil.

- I had a severely bad reaction to the verapamil when I started taking it in December 2013 and called the hospital to tell them what happened (a gp had to come to my house and pick me off from the floor, quite literally). I told them I needed to know what to do with the meds, continue or stop or adjust the dose or what. Never heard back and had to wait for our next face to face consult for answers. (That was a month away)

Now I thought that was a one-off mistake, which he blamed on the reception staff. But lately he's showing more of that behavior.

- Renewing my verapamil prescription takes him a week(!).

- Despite agreement to keep in touch through e-mail due to my bad health, he doesn't reply to more than half the emails and when he does reply, he doesn't fully answer my questions or even bother to politely write a greeting and conclusion.

- He actually misspelled my name when he did bother to include a greeting in an e-mail full of spelling mistakes and grammer mistakes. I'm no grammer-nazi but come on.. it comes across as pretty careless.

When I asked him if it was possible to prescribe me something to help me sleep (for long term use) other than melatonine, because it's not covered by the insurance and very expensive to use.

- He prescribed me something which the pharmacy warned me was meant for short term use and is addictive on long term use. Oh and it wasn't covered by insurance, either, cause he failed to add the code to make it so. No thanks doc, I don't need addiction in my life.

- What also bugs me is that he spends a lot of my face to face consult time talking about MS which has absolutely nothing to do with me or my condition or the reason of my consult. He just likes to hear himself speak and bluntly talks over me when I try to get him back on topic.

- he also answered a handful of calls on this cellphone during my consults with the excuse that it's a family member with health issues or something.

- A big whopper is a missed consult. I really needed a neurologist's advice during my recent bad period and he just wasn't to be reached. Did not reply to my emergency email. Did not answer the phone. I booked an official phone consult, in which he was supposed to call and he simply didn't call. The staff apologizes and explained they tried to get a hold of him but he wouldn't answer their call either. So I made another official phone consult appoint through the reception for the next day and he called me half an hour after the appointed time with clear disinterest in his voice.

At this point, I do not trust him anymore. I no longer believe he is fit as a doctor. But I'm stuck in the middle. The hospital he has forwarded me to, still has me in their start up procedures and haven't even assigned a proper neurologist to me yet. So technically, I don't exist there yet and have no doctor to turn to. I'm stuck in the middle. The best I have so far is an appointment next week with an intern there for the in-take before I get a real doctor.

I want to file an official complaint against my current neurologist, though I'm not sure how to go about doing that. Should I? Am I being unreasonably frustrated with my doctor or are these things indeed major errors on his part? Have you guys ever experienced a doctor behaving this way? An objective view would really be great. Maybe I'm just expecting too much from a doctor but the bad period scared the hell out of me and I really want to be able to count my doctor to catch me when things take a turn for the worst.

[ThatHurtsMyHead]

Echo,

Sadly I'm not sure many here can assist with your question.  Socialized medicine has some benefits, but there are a ton of negatives that go along with it.  In the US, if we don't like a doctor, or they appear to be a complete buffoon.  We just go to another doctor.  Eventually finding someone that's competent (hopefully).  I wouldn't take my car to a mechanic that's incompetent, nor will I ever visit a doctor (more than once) that's incompetent with my treatment. 

Sorry to hear you got the guy that passed his medical test (but not at the top):  I guess there has to be doctors that were at the bottom of the GPA but still get to use those "DR" initials.

J

[CHfather]

Echo, I'm glad that things are better for you!  I so much hope that they stay that way!  Do try the D3 (and don't forget indomethacin as a possibility).

I can't comment much on your relationship with your doctor. There are some things that seem pretty awful (such as missing the bad interaction between verapamil and lithium, and taking so long to renew your prescriptions); there are some that seem bad (like talking so much about MS); and there are some things that I don't think most people, in the US at least, would expect from their doctor (regular responses to emails, phone consults, etc.).  I was surprised when I did a little looking into this that there is no such thing as financial compensation for malpractice in the Netherlands, even when a doctor's error has caused death or severe injury.  The only reason for reporting a bad doctor is either to have that doctor "punished" or "corrected" in some way, or maybe to improve the overall medical system. 

Here is a pretty recent study about the results of complaints about doctors in the Netherlands. It doesn't suggest that the things you would describe would result in any significant action against your doctor. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3252193/

Here is some information about how to file a complaint, from a guide for expats http://www.access-nl.org/media/13949/health_care_guide_completed.pdf

>>Medical complaints systems exist for all branches of the profession, including hospitals and general practitioners. The Dutch, in general, have traditionally not made as much use of formal complaints systems as in some other countries. Some expats may feel that the Dutch medical profession is still rather closed regarding both individual and general criticism, compared with their own experience, so persistence may be required.

Financial compensation for medical mistakes is not a feature of Dutch culture. Each hospital and doctor will be able to inform you of the relevant procedure.

www.zorgbelang-zuid-holland.nl/index.php?p=48 (only in Dutch), or telephone 0900 243 70 70 (€0.10 per minute)<<

[alleyoop]

@CHfather, looks like you have, as usual (thanks so much!) gone above and beyond on your research and I am sure that Echo is quite appreciative, as are we all!

@Echo, without going into the whole question about the medical predicament that you find yourself in, let me add this:

Why not be your own best advocate? 

And this goes out to everyone reading this -- Don't leave your health up to someone else, professional or not!!  Thanks to this amazing thing called the "internet", no one has to.  Research and disseminate information on your own, especially when it comes to your health. 

And I just want to take this opportunity to thank all who contribute on this board!  [smiley=thumbsup.gif]  Without the thoughtful, empathetic feedback from you all, this forum and community would not be what it is today, which is nothing short of extraordinary!

[Echo]

CHfather: thank you very much for the information. Exactly what I needed to know. Especially the guide is very welcome. I'm impressed.

I wasn't going to aim for financial compensation but I want this on record.

I just found out why I had those horrible weeks of extra pain. You see, that doctor put me on topamax and I noticed an increase in pain when I hit 80mg a day. I contacted him about it and asked if I should stop taking it. He told me its impossible for topamax to make things worse and to continue the meds and increase the dose to 200mg a day.

As it turns out, eye pain, eye redness, is one of those side effects you should seek immediate medical help for when you take topamax. Which I did, I reached out to my neurologist and had my eye examined by my GP cause it just kept getting worse. Now it turns out these meds caused the liquid in my eye to increase, increasing the pressure on my eyeball which can lead to permanent damage and even blindness, if left untreated. So now I also need an eye doctor.

Financial compensation might not be in the stars, which is fine. That won't fix my eye anyway. But I wanna make damn sure that the hospital is aware of how this man practices medicine and hopefully help prevent other patients having to go through what I had to endure. As if being cursed with CH isn't bad enough, nobody should need to experience the bonus level of hell you experience when an already under pressure eyeball gets a CH attack on top of it.

If it weren't for you guys and the hope you gave me during that time... words can't describe.

[Bejeeber]

Agreed with the other commentators, and concerning CHf's constant assistance getting critical info to CH'ers who are in a bad place, well if his name isn't already in the dictionary under "godsend", I move that we petition to rectify that omission.

Personally I for the most part wrote doctors off long ago, but I haven't had the pleasure of an appointment with Boston Headache Doc.

While we can theoretically/technically change doctors on a whim here in the US, last time I checked, it's commonplace to have to wait 2 months for a first time appointment with a local headache specialist (the only kind of CH doctor I'd ever trust at all), and for a CH'er in high cycle that long of a wait is just extremely wrong IMO. For an episodic suddenly and unexpectedly hit with a cycle, it can render the medical system practically useless.

When, prior to my busting success, if I encountered this scenario I would tend to make an appointment with a run of the mill neurologist, knowing they'd be uninformed regarding CH, but with the intent of getting them to prescribe meds I had in mind and knew were the most likely to have some effectiveness. And O2. I did a LOT of research on the subject back then, since I knew I wouldn't have access to a doctor who had done any.