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New & Desperate


krisd71
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I was DX in July w/ CH. Started approximately 18-24 months ago periodically. 

The month of August I worked a total of four days. Last day, I was able to work was August 15th. 

It is difficult for me to write this post & to read other post. Please forgive, I skip words or try to put in simplest terms I can. 

I feel as my whole identify has become a cluster headache (f*#$). 

I have Horner's Syndrome due to childhood cancer 40 years ago in my left eye. My CH affect my right eye. I am legally blind in my R. eye. When I have CH & my eye completely swells shut I am blind. That doesn't include the pain. 

I have tried almost everything. I am not able to tolerate most the meds. I had a nerve block with no relief at all. 

I started becoming suspicious that CH may not be the primary headache recently. I had a MRI & MRA with & without contrast. Report was normal. 

I wanted to introduce myself & had some questions. I think I will wait on the questions. After reading some other posts, I have become frustrated. I  don't want to have a pity party. I am running out of time to resolve this issue. 

Thank you, 

Kris

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Kris, welcome you are in the right place for a wealth of information. 1st do not despair or give up. You made it this far. Tomorrow is a new day.

This site can help you make an informed decision on some different approaches to different types of ways to teat your headaches.

1st. If you have not yet gotten a prescription for oxygen with a non-rebreather mask and regulated at 15 litres per min minimum.

Another way is a Gentleman named Batch who has found that his D3 treatment (regimen) is a very effective way, 

And last alternative treatment. All ideas, are your choice. But have proven to be effective for many of us.

Please read, read and read and then read some more.

Don't hesitate to ask, a search bar is a valuable tool, as well as the main page, can guide you

Pain-Free Wishes

 

 

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Welcome Kris. Pile on the questions.

What type of schedule do your hits come on? I mean, do you know when they will hit or is it more random? Have you O2 to abort with? Are you using a non-rebreather mask with your O2? What meds are a failure? Have you tried caffeine at the start of a hit?

Many on this board have abandoned pharma for natural healing methods. Not that we don"t support those who find relief there, we do. Just so many of us have found that in the long run, they don't work.

What makes you suspicious that you have something other than CH? It is possible of course. Just wondering why you suspect. A normal MRI is what is found in CH. No physical cause to be seen there. 

ATB

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@spiny 

@ClusterHeadSurvivor 

I want to thank both of you for your quick response. Your empathy made me cry.  

Dr. wrote a script for oxygen & mask. Í was unable to find any place that would fill it for one reason or another. I saw the post on getting it from a welding supply. I went to ER when one time & yes it did abort it. It started again as soon as I walked out the door. Then there is an issue of my boyfriend's son. He has quite a few serious behavioral issues including setting fires. Which is a concern. I had gotten approval to keep at work. I work in a prison so I cannot keep in my office. 

He put me on Veramil. I was so dizzy & lethargic that could not stand. I relucantly agreed to try Topamax because of cognitive issues. I already have cognitive problems. Granted, nothing major but surely don't need to make them worse. Today, I am suppose to be at 100mg. But at 75, I was having problems with word recall. And the side effect of numbing hands & feet. It knocks me out and when I wake up I have no idea where I am at. I have my 1st CH about 730am. So, when I take the Topamax, I am not awake before it hits. The CH wakes me up & I am trying to figure out where I am. 

He did the nerve block about a month ago with lidocaine/cortisone. As soon as he mentioned nerve block my PTSD kicked in full force. That was an emotional upheaval for absolutely nothing. It didn't work. They continued to get worse. That's when he ordered the MRA & MRI. I called on the last week of the month asking if he had any "Hail Mary's" bc I was going to be employed by new contractor @ midnight on Sept. 1st. He said, a large dose of steroids. The last 2x, I have not faired so well. Both for pnuemonia. Last one was less than 6 months ago and I ended up in the ER. 

I take melatonin and multi vitamin. I have tried high doses of D & it made me miserable. This was prior to DX. I have not read the D3 thread, yet. 

Until recently, I have never had them in the middle of the night. I have 2 CH in the AM. Normally, after 1pm, I am somewhat better, with a few intermittent in the afternoon that most of the time are not as severe. And then, I have another big one about 9pm. 

I have become concerned bc everything I have read mentions others being pf. My eye seems to never stop hurting. Not same pain as the CH. But when I try to look in certain directions it causes immense pain that will trigger CH. I can not bear any direct bright lights (sunlight after 12pm or florescent). It is a excuraiating. 

I got upset when I was registering as CH patient & trying to find criteria. I gave up because I saw all the other classifications. I have a tendency to irrationally overreact to health issues due to before mentioned PTSD due to childhood cancer. 

I will read more boards. All I have is my phone to access Internet and reading can become difficult sometimes. 

What are shadows? I read omnious feeling. Can someone elaborate a little more. 

Thanks so much for all yall do. It is amazing this community exist and is so well organized. I am truly amazed. I don't know why I didn't reach out sooner. My Dad found y'all & was insisting I contact yall. I can be a little hard headed, lol.

Kris

 

 

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kris', how long do your more severe attacks last?  How long do the "intermittent" ones last?  You are right that while some of your symptoms sound like classic CH ("clockwork" regularity; effect on your eyes; excruciating pain) some do not (the very severe effect of bright light, even to the extent of causing an attack; the constant eye pain; even the intermittent attacks).  What do you do when you have an attack?

The likely reason for your ER experience with O2 (of the attack starting again not long afterward) is just that you weren't on the O2 long enough.  People typically learn to stay on for 5-10 additional minutes after an attack has been aborted.  So, what can you do to get O2 and store it safely?  You say you had a prescription but no one would fill it. (My first thought about that is "Florida," since we hear that complaint frequently from people in Florida, but it's not so common elsewhere.)  Can your father help with that?  There's really no good reason, and probably no legal reason, for an oxygen supply company to refuse to give you O2.  If you can't get medical O2, you do have the option (as you have noted) of using welding oxygen, as many people do.

It's not clear to me whether you tried the steroids.  They will often stop CH pain for a while, although the CH is very likely to come back as you taper down off the steroids.

You don't seem to have an abortive.  Typically, the go-to abortive aside from oxygen is injectable sumatriptan, which will stop an attack almost immediately.  But I fear you will not like the side effects.  Oxygen is crucial.

The D3 regimen does include very large dosages. (It's here: https://clusterbusters.org/forums/topic/1308-d3-regimen/.)  If it's something you would be willing to try (because it is very, very effective for CH), I would strongly urge you to send a Private/Personal Message to Batch, who developed the regimen, and discuss with him the symptoms you had before when you took high levels of D.  He will be completely happy to receive a message from you, and he will respond promptly.  To "PM" him, click on the envelope icon at the top right of the page, and put Batch in to To line.

Somewhere, you had a doctor who was good enough to diagnose your condition and write you a prescription for oxygen.  That puts you way ahead of the game -- the average time before getting diagnosed is something like five years, and I'd say that at least half of doctors don't prescribe O2, even with a CH diagnosis.  You might or might not have CH, or you might have CH plus something else, but it does seem that you have a doctor who is better than what most people experience.  That's very valuable.

 

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@spiny 

@ClusterHeadSurvivor 

I want to thank both of you for your quick response. Your empathy made me cry.  

Dr. wrote a script for oxygen & mask. Í was unable to find any place that would fill it for one reason or another. I saw the post on getting it from a welding supply. I went to ER when one time & yes it did abort it. It started again as soon as I walked out the door. Then there is an issue of my boyfriend's son. He has quite a few serious behavioral issues including setting fires. Which is a concern. I had gotten approval to keep at work. I work in a prison so I cannot keep in my office. 

He put me on Veramil. I was so dizzy & lethargic that could not stand. I relucantly agreed to try Topamax because of cognitive issues. I already have cognitive problems. Granted, nothing major but surely don't need to make them worse. Today, I am suppose to be at 100mg. But at 75, I was having problems with word recall. And the side effect of numbing hands & feet. It knocks me out and when I wake up I have no idea where I am at. I have my 1st CH about 730am. So, when I take the Topamax, I am not awake before it hits. The CH wakes me up & I am trying to figure out where I am. 

He did the nerve block about a month ago with lidocaine/cortisone. As soon as he mentioned nerve block my PTSD kicked in full force. That was an emotional upheaval for absolutely nothing. It didn't work. They continued to get worse. That's when he ordered the MRA & MRI. I called on the last week of the month asking if he had any "Hail Mary's" bc I was going to be employed by new contractor @ midnight on Sept. 1st. He said, a large dose of steroids. The last 2x, I have not faired so well. Both for pnuemonia. Last one was less than 6 months ago and I ended up in the ER. 

I take melatonin and multi vitamin. I have tried high doses of D & it made me miserable. This was prior to DX. I have not read the D3 thread, yet. 

Until recently, I have never had them in the middle of the night. I have 2 CH in the AM. Normally, after 1pm, I am somewhat better, with a few intermittent in the afternoon that most of the time are not as severe. And then, I have another big one about 9pm. 

I have become concerned bc everything I have read mentions others being pf. My eye seems to never stop hurting. Not same pain as the CH. But when I try to look in certain directions it causes immense pain that will trigger CH. I can not bear any direct bright lights (sunlight after 12pm or florescent). It is a excuraiating. 

I got upset when I was registering as CH patient & trying to find criteria. I gave up because I saw all the other classifications. I have a tendency to irrationally overreact to health issues due to before mentioned PTSD due to childhood cancer. 

I will read more boards. All I have is my phone to access Internet and reading can become difficult sometimes. 

What are shadows? I read omnious feeling. Can someone elaborate a little more. 

Thanks so much for all yall do. It is amazing this community exist and is so well organized. I am truly amazed. I don't know why I didn't reach out sooner. My Dad found y'all & was insisting I contact yall. I can be a little hard headed, lol.

Kris

 

 

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@CHfather

As usual, I left out some info. I have taken several different forms of summitripans. Now I have the Zomig injections. But you are correct the side effects suck. I have severe anxiety to begin with & that obviously don't help. The injection makes me feel so bad & then knocks me out. And I normally, wake up with the same way.

I live in Texas. Before they got this bad I was calling around for the O2. Only one place in my area had them available but didn't take my insurance. 

My father lives in another state. 

I will look into the D3. 

My pain orginally just my eye. Now I have pain in my eye, my ear, temple, & above my brow. I know that I getting tension headaches because of being so tense all the time. I eat exerdrin like candy. 

Thank you, 

Kris 

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Don't give up. Keep calling around for oxygen and have your doctors office call the most receptive oxygen supplier. If all else fails, get a welding tank. I was hesitant to bust but did and it has been amazing. Look into the seeds. Many of these things seem crazy to consider but desperate times call for desperate measures. I asked many doctors about "busting" and treatment alternatives and they all like to use the word "anecdotal" when describe the success rates. Until we get some serious funding and legal changes, everything result we have will be anecdotal but the fact remains, many people have had dramatic successful results. Stay strong. You will figure it out and it will get better. I was on the verge of the "ultimate solution" a few months ago. I was in tears daily. Folks here talked me off the cliff and I kept eating, learning and coping. Now I virtually pain free with minor occaisional hits and shadows. There is hope. Been your own best advocate but be sure you are 100% you are actually treating CH and that there is nothing else going on. Good luck.

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11 minutes ago, Clusterfukked said:

 I asked many doctors about "busting" and treatment alternatives and they all like to use the word "anecdotal" when describe the success rates. Until we get some serious funding and legal changes, everything result we have will be anecdotal . . . 

The psilocybin study currently underway at Yale Medical School, long lobbied for by ClusterBusters, is going to give us some kind of hard evidence.

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All the evidence I need is in my head ... or rather ISN'T anymore !! ... for now anyway. I do hope this is a step in the right direction. The thought of busting is scarier than the next attack to some people and that is if they can even acquire the medicine. Seeds may be the answer but even that is daunting for some folks. Seems we are programmed to look for the answer in an easy to swallow pill. That would be a dream but the cynic in me feels big pharma will find a way to make a cure tough. Anxious to read the study results 

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@Clusterfukked

I appreciate all your encouragement and support. I still not sure of all the terms just yet. But I think I get the jest. At this time, I am unsure if I even have health insurance anymore. I knew I was going to have a different insurance plan as of September 1st. At that time, I was not sure if he would be in my network. I don't even know if I am on personal leave, FMLA, or short term disability. There is a huge lack of communication. I should find something out tomorrow. 

 

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Hey Kris,

That pain you describe is all part of the trigeminal nerve bungle. It enervates one side of you face and the front/top quarter of your head on that side. Any branch can become inflamed with CH. I call it an octopus as it controls and touches so many areas of the head and face and teeth. Sometimes doctors will diagnose Trigeminal Neuralgia when the nerve becomes inflamed, Others see it as an extension of CH. The nerve is aggravated and inflamed. Also the reason some feel the pain of CH mostly in the temple.

Shadows are residual pain from a hit or pain preceding an attack. They can be just a nuisance or incapacitating to some degree. Caffeine is a help for shadows. So is ginger, in the form of tea or candy that contains the real thing. Fresh ginger is very hot! Both are better than Excedrin for shadows according to most.

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After thought here Kris. Have you seen an Opthalomologist? I mean the real eye doctor, now the one who just fits glasses for you. It might be a good idea if your insurance will cover it. Since you have other issues with regard to your eyes, I would definitely suggest seeing one. I have Wet Macular Degeneration. It strikes the center of your visual field and blurs it out completely. Caused by an over growth of blood vessels in the macular. I have been seeing a Retinal Specialist for it for about two years now.

Well, I went in one day with blurry spots at 10 and 12 on the clock in my CH eye. That eye had not suffered from WMD. He announced that that particular type of WMD comes with migraines!! Oh happy day. So, while it is billed as one thing, headaches can cause vision loss too. Sucks. So, I encourage you to see a specialist for you eye. You need it so badly!!! I would hate for that to get left by the wayside in your search. I had never heard of it until this summer. Hopefully you still have an eye specialist in your arsenal of doctors.

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