Jump to content
ClusterBusters
Sign in to follow this  
simplescapes

Newbie with many questions

Recommended Posts

Hi,

last August started having strange symptoms-went to ER thought was having stroke-dx with incidental benign meningioma. So after seeing about 10 docs (5 tested for different tickborne dx) neuro dx me with “vascular migraine variant”. One of the Er docs when unsure of dx told me about clusterheadche (I worked in med field and never heard of CH) and eye dr said he thought CH (I had attack after having eyes dilated in office he proceeded to look in eyes with light scope) my PCP thinks “exertion headache”.

Some of my questions are:

1. Does anyone get aura before CH?

2. Does anyone have excruciating calf pain during CH?

3. So far Sept 17- APRIL 18 I was affected by _______???? Haven’t had any headache since but have started feeling fatigue and a little dizzy- does anyone have warning signs to when remission period ends?

4. Some additional details saw dentist to rule out infection in upper teeth, had massive attack after drinking beer last summer, i rock and moan during attacks, have tried doing crazy strenuous outdoor tasks attempting to do something “more painful?”, thought about putting my head in a snow bank? Last winter because I can’t seem to push/get the cold packs close enough/cold enough. Saw eye dr after attack from pushing cold pack too hard on eye-thought I injured eye. Can’t stand hot baths- hot weather, avoid anything I perceive as might be dialting. Even though I haven’t had the pain for over 6 months now, I feel anxious not having concrete dx and when will this come back. I have never had headaches in my life! I’ve been prescribed nasal sumatriptan and triptan pills (comes on a like a freight train) at first thought pills were causing pain, then I realized no they weren’t working and it was the headache. Tried indomyccin just got bad stomachache. Very distressing thing to first expierence especially in the beginning- I thought I had Lyme dx or stroke and then they found the benign brain tumor which neuro did not even address at appt, I brought it up before he walked up and he pretty much acted like I was talking about a zit on someone’s face. I worked in the OR as a surg tech with some of these A holes so it really wasn’t surprising. So I appreciate anyone’s insight and thanks for the vent. 

Share this post


Link to post
Share on other sites

 

9 hours ago, simplescapes said:

1. Does anyone get aura before CH?

2. Does anyone have excruciating calf pain during CH?

3. So far Sept 17- APRIL 18 I was affected by _______???? Haven’t had any headache since but have started feeling fatigue and a little dizzy- does anyone have warning signs to when remission period ends?

simple', I really got nothing valuable for you, but . . . 

Regarding #1, here is a passage from a fairly large study of CH patients in 2011.  It answers the "does anyone" part of your question, but it's pretty fuzzy overall:

A total of 21% of survey responders noted an aura history before a

cluster headache attack. Survey responders were
asked if they ever experienced any symptoms including
aura prior to cluster headache onset. Auras could
be visual, sensory, language/speech, and brainstem
(dizziness and vertigo). Aura duration was less
than 5 minutes in 25%, 5-10 minutes in 30%,
11-15 minutes in 17%, 16-20 minutes in 10%,
21-25 minutes in 10%, and 25 minutes or more in 8%
of patients. Almost all auras with cluster headache
lasted less than 25 minutes (92%), and 55% of
patients with cluster headache had auras that lasted
10 minutes or less.

#2.  I haven't heard of this, and I'd say it's surely not common, but maybe someone has it as a symptom.

#3.  Yes, some people have warning signs that their cycles are beginning, but again -- from what I have read -- fatigue and dizziness aren't common onset signals.

#4. There are a lot of CH-like symptoms in there (beer as a trigger, rocking and moaning, thinking it's a teeth issue), but others not so familiar to me.  You don't say much that relates to the basic diagnostic things: timing of attacks, length of attacks, attacks/day, location(s) of pain, physical manifestations in eyes/nose. I assume you have looked up the symptoms or indicators and know what they are.  Triptans in pill form virtually never work for CH; nasal spray sometimes works; injections almost always work (although there's nothing diagnostically useful about that since triptan injections work for a lot of types of "headaches").  You don't mention oxygen, which when set up and used effectively aborts attacks for a very large percentage of people with CH.  That might be a next step with both therapeutic and diagnostic potential, since O2 is generally not effective for other headache types.

Share this post


Link to post
Share on other sites
15 hours ago, simplescapes said:

Some of my questions are:

1. Does anyone get aura before CH?

I do not. But my symptoms shift about and change between cluster periods. I developed photophobia during attacks in my last two clusters.

2. Does anyone have excruciating calf pain during CH?

No. But could be stress induced muscle cramps?

3. So far Sept 17- APRIL 18 I was affected by _______???? Haven’t had any headache since but have started feeling fatigue and a little dizzy- does anyone have warning signs to when remission period ends?

Are the headaches waking you up at night? I feel exhausted because my sleep gets horrendously disrupted during clusters. Fatigue and dizziness could be due to losing sleep.

4. Some additional details saw dentist to rule out infection in upper teeth (ruling out teeth is a step in the right direction), had massive attack after drinking beer last summer (alcohol is a headache trigger for many, incl. me.), i rock and moan during attacks (yup... rocking, moaning, clutching head, pacing, banging head on wall), have tried doing crazy strenuous outdoor tasks (exercise can bring on attacks... but can also abort them...)  attempting to do something “more painful?” (don' self harm, it doesn't help, and gives you more injuries to worry about), thought about putting my head in a snow bank? Last winter because I can’t seem to push/get the cold packs close enough/cold enough (I rub tiger balm on the temple of the affected side, takes your mind off the searing pain a little). Saw eye dr after attack from pushing cold pack too hard on eye-thought I injured eye ( :( ). Can’t stand hot baths- hot weather (yeah... climate, weather and seasonal changes can be a trigger), avoid anything I perceive as might be dialting. Even though I haven’t had the pain for over 6 months (be grateful for small mercies. As an episodic sufferer, my heart goes out to chronic sufferers. If it is CH, episodic is the one you 'want') now, I feel anxious not having concrete dx and when will this come back. I have never had headaches in my life! I’ve been prescribed nasal sumatriptan and triptan pills (comes on a like a freight train) at first thought pills were causing pain, then I realized no they weren’t working and it was the headache (nasal and pill form often doesn't work as CH comes on too fast. Injections are the way to go if it is CH. Although, they can cause 'snapbacks', medicine induced CHs.). Tried indomyccin just got bad stomachache. Very distressing thing to first expierence especially in the beginning (Yes. Its horrible. I thought I was going to die for a while, in the beginning. Brain tumour, stroke, whatever...)- I thought I had Lyme dx or stroke and then they found the benign brain tumor (is there such a thing as 'benign brain tumours'?!) which neuro did not even address at appt (that's weird... did they make you a follow up to discuss it?), I brought it up before he walked up and he pretty much acted like I was talking about a zit on someone’s face. I worked in the OR as a surg tech with some of these A holes so it really wasn’t surprising. So I appreciate anyone’s insight and thanks for the vent (the pressure builds up in us all. I'm certain this community helps to save lives and sanity. You've come to the right place to talk about CH.)

 

Share this post


Link to post
Share on other sites
9 hours ago, CHfather said:

 

simple', I really got nothing valuable for you, but . . . 

Regarding #1, here is a passage from a fairly large study of CH patients in 2011.  It answers the "does anyone" part of your question, but it's pretty fuzzy overall:

A total of 21% of survey responders noted an aura history before a

cluster headache attack. Survey responders were
asked if they ever experienced any symptoms including
aura prior to cluster headache onset. Auras could
be visual, sensory, language/speech, and brainstem
(dizziness and vertigo). Aura duration was less
than 5 minutes in 25%, 5-10 minutes in 30%,
11-15 minutes in 17%, 16-20 minutes in 10%,
21-25 minutes in 10%, and 25 minutes or more in 8%
of patients. Almost all auras with cluster headache
lasted less than 25 minutes (92%), and 55% of
patients with cluster headache had auras that lasted
10 minutes or less.

#2.  I haven't heard of this, and I'd say it's surely not common, but maybe someone has it as a symptom.

#3.  Yes, some people have warning signs that their cycles are beginning, but again -- from what I have read -- fatigue and dizziness aren't common onset signals.

#4. There are a lot of CH-like symptoms in there (beer as a trigger, rocking and moaning, thinking it's a teeth issue), but others not so familiar to me.  You don't say much that relates to the basic diagnostic things: timing of attacks, length of attacks, attacks/day, location(s) of pain, physical manifestations in eyes/nose. I assume you have looked up the symptoms or indicators and know what they are.  Triptans in pill form virtually never work for CH; nasal spray sometimes works; injections almost always work (although there's nothing diagnostically useful about that since triptan injections work for a lot of types of "headaches").  You don't mention oxygen, which when set up and used effectively aborts attacks for a very large percentage of people with CH.  That might be a next step with both therapeutic and diagnostic potential, since O2 is generally not effective for other headache types.

 

9 hours ago, CHfather said:

 

simple', I really got nothing valuable for you, but . . . 

Regarding #1, here is a passage from a fairly large study of CH patients in 2011.  It answers the "does anyone" part of your question, but it's pretty fuzzy overall:

A total of 21% of survey responders noted an aura history before a

cluster headache attack. Survey responders were
asked if they ever experienced any symptoms including
aura prior to cluster headache onset. Auras could
be visual, sensory, language/speech, and brainstem
(dizziness and vertigo). Aura duration was less
than 5 minutes in 25%, 5-10 minutes in 30%,
11-15 minutes in 17%, 16-20 minutes in 10%,
21-25 minutes in 10%, and 25 minutes or more in 8%
of patients. Almost all auras with cluster headache
lasted less than 25 minutes (92%), and 55% of
patients with cluster headache had auras that lasted
10 minutes or less.

#2.  I haven't heard of this, and I'd say it's surely not common, but maybe someone has it as a symptom.

#3.  Yes, some people have warning signs that their cycles are beginning, but again -- from what I have read -- fatigue and dizziness aren't common onset signals.

#4. There are a lot of CH-like symptoms in there (beer as a trigger, rocking and moaning, thinking it's a teeth issue), but others not so familiar to me.  You don't say much that relates to the basic diagnostic things: timing of attacks, length of attacks, attacks/day, location(s) of pain, physical manifestations in eyes/nose. I assume you have looked up the symptoms or indicators and know what they are.  Triptans in pill form virtually never work for CH; nasal spray sometimes works; injections almost always work (although there's nothing diagnostically useful about that since triptan injections work for a lot of types of "headaches").  You don't mention oxygen, which when set up and used effectively aborts attacks for a very large percentage of people with CH.  That might be a next step with both therapeutic and diagnostic potential, since O2 is generally not effective for other headache types.

Thanks for the info, I had the attacks mainly around 3ish in afternoon never waking me at night. They are intense right sided head pain behind right eyeball, feels like someone cracked the base of my skull with a baseball bat, upper teeth pain, sweaty face, sometimes like a vice on head very very hungry afterwards like I haven’t eaten in days. Why it’s confusing is Er dr, eye dr and PA said maybe CH, neuro says vascular migraine and pcp says exertion headache and “we treat all migraines really with the same meds sooooo” knowing which type isn’t really important and maybe you had a virus???? I asked to try oxygen and he said would be too cumbersome when in the car etc..... during that period there was no driving for me, I don’t think he even slightly understood, I wasn’t going anywhere I was at home and so I left his office thinking if this does return it will be time to schedule with a headache expert. 

Share this post


Link to post
Share on other sites
4 hours ago, HazBaz said:

 

 

4 hours ago, HazBaz said:

 

Thanks, I appreciate the info never heard of tiger balm. Even though I’ve seen over 10 docs and have 3 different diagnosis’s (one dr said this isn’t migraine) I’ve learned to have compassion for whatever I have however it’s difficult when people I know who I’ve reached out to who have hormonal migraines say they use a hot pack, take a Advil pm and go to sleep. This is how I knew whatever I had was not the same thing!!! Laying down is not an option and being a passenger in the car was horrible. It’s a very primal feeling like an injured animal, when people have tried helping me or asking questions during attack I’m very very irritable and can’t focus on anything else but the pain, I’ve have to go to another place and sometimes just trying to explain it there are no words other than primal. I was dx with a brain meningioma during this process, some grow fast and others not, so the protocol is to get it scanned every year because removing them can be worse if they don’t grow. Neuro didn’t even bring it up so I did and he said you didn’t have a stroke, and it’s not the cause of my “headaches” not going back to him. I worked in healthcare it’s fine just gotta find a headache specialist now. 

Share this post


Link to post
Share on other sites
32 minutes ago, simplescapes said:

 

Thanks for the info, I had the attacks mainly around 3ish in afternoon never waking me at night. They are intense right sided head pain behind right eyeball, feels like someone cracked the base of my skull with a baseball bat, upper teeth pain, sweaty face, sometimes like a vice on head very very hungry afterwards like I haven’t eaten in days. Why it’s confusing is Er dr, eye dr and PA said maybe CH, neuro says vascular migraine and pcp says exertion headache and “we treat all migraines really with the same meds sooooo” knowing which type isn’t really important and maybe you had a virus???? I asked to try oxygen and he said would be too cumbersome when in the car etc..... during that period there was no driving for me, I don’t think he even slightly understood, I wasn’t going anywhere I was at home and so I left his office thinking if this does return it will be time to schedule with a headache expert. 

Also, forgot never vomit, very irritable, feel only relief is from attempting to freeze my head and eye which that sensation is kind of a distraction from the pain. Most times I’m pacing about the bedroom (don’t like other people seeing me want to be alone and get more irritable when husband tries helping or people talking) tried once going outside in the woods but sometimes I’ll sit in bed and rock, sometimes feels like the pain forces me to get in a crunched bent over position. Laying supine on my back is the worst not an option! Never in the same spot , always trying to MOVE , move to a comfortable spot while pushing cold packs as hard as I can. 

Share this post


Link to post
Share on other sites
39 minutes ago, simplescapes said:

I had the attacks mainly around 3ish in afternoon never waking me at night. They are intense right sided head pain behind right eyeball, feels like someone cracked the base of my skull with a baseball bat, upper teeth pain, sweaty face, sometimes like a vice on head very very hungry afterwards like I haven’t eaten in days. Why it’s confusing is Er dr, eye dr and PA said maybe CH, neuro says vascular migraine and pcp says exertion headache and “we treat all migraines really with the same meds sooooo” knowing which type isn’t really important and maybe you had a virus???? I asked to try oxygen and he said would be too cumbersome when in the car etc..... during that period there was no driving for me, I don’t think he even slightly understood, I wasn’t going anywhere I was at home and so I left his office thinking if this does return it will be time to schedule with a headache expert. 

Sure sounds like CH. There's nor real point in me talking about how stupid the medical advice you have received is -- you already know that.  Nobody talks about "vascular migraine" anymore -- CH is just as "vascular" as migraine; it seems unlikely that you overexert yourself at roughly 3:00 every day . . . .  and some day maybe we will know why so many doctors are so incredibly, tragically (for the patients) lost when it comes to O2.  I would only urge you not to take an "if it does return" stance and assume that it will.  Since headache centers often have long wait times for appointments, I would seriously consider setting up an appointment now.  And it is probably very advisable to start the D3 regimen now:  http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Share this post


Link to post
Share on other sites
32 minutes ago, CHfather said:

Sure sounds like CH. There's nor real point in me talking about how stupid the medical advice you have received is -- you already know that.  Nobody talks about "vascular migraine" anymore -- CH is just as "vascular" as migraine; it seems unlikely that you overexert yourself at roughly 3:00 every day . . . .  and some day maybe we will know why so many doctors are so incredibly, tragically (for the patients) lost when it comes to O2.  I would only urge you not to take an "if it does return" stance and assume that it will.  Since headache centers often have long wait times for appointments, I would seriously consider setting up an appointment now.  And it is probably very advisable to start the D3 regimen now:  http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

thanks, saw a intergrative dr when thought I had lyme and mast cell activation so I started taking antihistamines. Allergies are a player somehow for me, most nights I’m so stuffy can’t even taste dinner- I used Flonase for a long time and thought that was contributing to my visual aura so discontinued using it and started Allegra everyday, also was taking 8,000 iu of vitamin d and spend about 3 hrs in sun everyday. In beginning was thinking maybe MS which led me to the vitamin D. Frustrating having worked in OR and having a strong understanding how body works and go through this... I do need to schedule headache specialist appt seeing this was the time last year when things first started, frankly on a very basic human level- it’s scary and I’m terrified not knowing, and wondering what’s going to happen and how will I do it again. Weeks maybe months can’t remember after ER trip I thought “that ER dr was crazy, clusterheadche, I don’t have a headache” What was that guy talking about.? So I watched a YouTube video on CH and for the first time thought wow that looks like what I have. Who knows- in the beginning I relied on gutteral instincts and some of my past training and with or without a dx did what I could with the info I had, it’s been very stressful getting to this point. Oh well thanks for the info read a bit and will definitely read more, take a bunch of those supplements already so at least on the right track

Share this post


Link to post
Share on other sites

I'm not sure what the info I referred you to on the D3 regimen says about allergies, but the developer of the D3 regimen recommends Benadryl 4/day (25 mg three times and 50 mg at night), because he has noticed a strong correlation between high-pollen seasons (ands allergies in general) and CH.

CH is a very harsh thing to have, and your fears about another cycle are justified. However, if you have CH, you had none of the treatments that make it manageable for most people.  D3, a preventive (usually verapamil), an abortive (oxygen and injectable sumatriptan), awareness of triggers, use of melatonin, caffeine in some form, and some other tricks -- those all help, and you had none of them.  A course of corticosteroids can sometimes help, too.  And the new medication, erenumab (Aimovig), is showing a lot of promise as an effective preventive. None of this will fully alleviate your fear (there have been people here with chronic CH who have said they preferred it because they didn't live in dread any longer about when their next cycle might come), but also your fear shouldn't be disproportionate to the treatment possibilities. And I haven't mentioned "busting," which is the reason this site exists and which has made a huge difference for many.  Read about busting in the numbered files in the ClusterBuster Files section, and also look through that section for other potentially helpful information ("Bob's Big Pocket Guide" is very thorough). 

Edited by CHfather

Share this post


Link to post
Share on other sites
5 minutes ago, CHfather said:

I'm not sure what the info I referred you to on the D3 regimen says about allergies, but the developer of the D3 regimen recommends Benadryl 4/day (25 mg three times and 50 mg at night), because he has noticed a strong correlation between high-pollen seasons (ands allergies in general) and CH.

CH is a very harsh thing to have, and your fears about another cycle are justified. However, if you have CH, you had none of the treatments that make it manageable for most people.  D3, a preventive (usually verapamil), an abortive (oxygen and injectable sumatriptan), awareness of triggers, use of melatonin, caffeine in some form, and some other tricks -- those all help, and you had none of them.  A course of corticosteroids can sometimes help, too.  And the new medication, erenumab (Aimovig), is showing a lot of promise as an effective preventive. None of this will fully alleviate your fear (there have been people here with chronic CH who have said they preferred it because they didn't live in dread any longer about when their next cycle might come), but also your fear shouldn't be disproportionate to the treatment possibilities. And I haven't mentioned "busting," which is the reason this site exists and which has made a huge difference for many.  Read about busting in the numbered files in the ClusterBuster Files section, and also look through that section for other potentially helpful information ("Bob's Big Pocket Guide" is very thorough). 

I’ll refer to that section, read in previous link you sent about the Benedryl which I took about 10 minutes ago. I’m a very outdoorsy person, camp, garden, hike worked outdoors so makes sense-also since intergrative dr was thinking histamine issue with mast cell which I didn’t follow up on because of traveling out of state to see dr. I do chug coffee I know this helps is a vasoconstrictor- neuro also mentioned something about my autonomic nervous system years back would get presyncope symptoms about 2/year so would drink liters of water and load up on salt avoid humid weather etc... so when I saw him for “headaches” and meningeoma he was only concerned with those past episodes (I’ve had eeg no seizures) of feeling faint. Maybe he thought those past episodes were what I’m experiencing now or they are connected in some way. Last year with the testing and amount of dr appts was brutal and I will say the past 6 months were a blessing. 

Share this post


Link to post
Share on other sites

You might know that CH was once called (and still is, I guess) "histamine headache."  You don't need this now, but many people find that quickly drinking an energy shot such as 5-Hour-Energy at the start of an attack can help quite a bit.  There's a lot of caffeine in those things (= couple of cups of coffee), and many believe  that other ingredients in energy shots (taurine, maybe niacin, maybe B vitamins) also help.

Share this post


Link to post
Share on other sites
7 minutes ago, CHfather said:

You might know that CH was once called (and still is, I guess) "histamine headache."  You don't need this now, but many people find that quickly drinking an energy shot such as 5-Hour-Energy at the start of an attack can help quite a bit.  There's a lot of caffeine in those things (= couple of cups of coffee), and many believe  that other ingredients in energy shots (taurine, maybe niacin, maybe B vitamins) also help.

Interesting- I’ll have those ready. Kinda sad how little info is known in the medical community and how many medical professionals I saw and the stack of EOBs and how much I’ve had to do myself to seek some sort of relief. Whether in the future I find out this is indeed what I have or something else I know deep down for me it’s connected to allergies (mri showed maxillary mucosal thickening), seasonal something (shorter days less sun) lack of supplements (Er visit my potassium was tenth of point low) and vasodilation and out of all of this data to the docs means nothing. You should see thier faces when I ask about why is this happening or when they ask why I’m taking so many supplements, or why it’s ok to trial endomycin to see what happens but not get to trial oxygen I asked about, I’ve lost confidence that I will get help from doctors which is why I’ve reached out here. CH is the closest dx to what I have, except I’m a woman, don’t wake up during sleep, don’t explain my pain as hot poker or some other very specific identifiers. Thanks again, every bit is extremely helpful

Share this post


Link to post
Share on other sites

Ratio of women to men diagnosed with CH has dropped from 6:1 to 2:1, and I at least am completely willing to believe that that's just diagnostic error based on the assumption that women don't get CH.  Nighttime attacks are not necessary for CH diagnosis.

Share this post


Link to post
Share on other sites
1 hour ago, CHfather said:

Ratio of women to men diagnosed with CH has dropped from 6:1 to 2:1, and I at least am completely willing to believe that that's just diagnostic error based on the assumption that women don't get CH.  Nighttime attacks are not necessary for CH diagnosis.

I track symptoms which has been the biggest help since it all began, end of March 2017 for two weeks things tapered off, I would get quick electrobolt jabs on top of head and think oh crap and it wouldn’t  turn into full blown one so that happened everyday, during that period I couldnt wear hair in pony tail or wear hats my scalp was always tender couldn’t put glasses on top of head while reading because those things were uncomfortable in that two week period those things started to drift away and didn’t hurt anymore to where in April 2 big ones and then poof gone. Last week, I wrote down level 1-2 used cold pack little teeth ache but no big full blown, that happened 3 times last week and yesterday had major photophobia, feels like eyes being pulled on, fatigue and top of head tender... strange??? Almost same type symptoms when it ended last time are cooking back up which is why I asked originally if people know when remission is coming to an end

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×