Hello,
My name is Mystina and I'm 23. Erm, not really sure how to go about this, I've been reading the site since my computer has been up again (about a week) and trying to convince myself to sign up and post. Honestly, I'm not even sure if I'll just end up erasing this, or not.

First of all, I need some information.

I need to know if there are any medications sufferers have found that make this worse. If I missed the link, I apologize, I'm a bit out of it right now. I'm on a lot of medication and feel kind of...self concious posting the list here (I have a list typed out for doctors mostly, and of my allergies.) I need to know due to all of the medicine I'm on, so I can rule out anything that might be contributing.

Second, I need to know if there is anyone out there with Small Vessel Disease of the brain, dealing with this also. I searched the forum for this, and found nothing, but hoped maybe if I posted....

I've been suffering since May 28th, multiple ER trips, speaking to multiple doctors, and to another sufferer who we know, and they've all said I've got the classic symptoms. They've ruled out everything else (and I mean everything, I have prexisiting conditions.) but won't make a full diagnosis until I see the neurologists next month.

My attack time seems to be in the morning, I'm a hard sleeper, there are only 2 people who can easily wake me up, and neither are around me right now. All of the sudden, in the morning I will wake up, sharp stabbing pain. Usually it's on the hour when it happens, 5-11am... Anytime between then, I will wake up, in pain. It doesn't matter how much of a sedative I take, what I'm given, I wake up with the pain and depending on how ill I am from the other things, do one of a few things.

Although it's hard, I may just sit and hold my head, laying down causes me more pain. This usually devolves into me grabbing my hair and pulling it, pressing on my left eye, unable to do anything for the pain. If I have any energy, I am up, pacing holding my head, groaning. It scares the crap out of me because of the fact I have had pain pretty much all of my life, I can normally sit and be still and quiet and no one can tell I'm in pain....

With this? Everyone knows. They can see it on my face, or because I'm grabbing at my head. This morning I cried, and I honestly thought that physical pain couldn't do that to me anymore. I'm a little more than disturbed by this.

Partially because of the horrible pain, I have so much to live for and the pain becomes so severe I'm suddenly thinking "I wish I could die". This isn't depression, this is such severe pain I can't even cope, and I know how to cope! I was in pain management for pain from multiple compression fractures and bone pain from juvenille osteoporosis! I mean even partially sedated, a spinal tap where they hit the nerve root just makes me go "Ow, you hit my nerve root. Try not to do that again, kay?" even when I know my leg will hurt for the next week and there will be nothing I can do to soothe it.

This pain is worse than someone jabbing my nerve root with a needle! I don't even know how that's POSSIBLE. I'm not the type to give in to pain, I mean my appendix ruptured and it wasn't as bad as this. I mean hell, even the 36 hours it took them to decide yes, that was the problem, and get in there and take care of it isn't comparable to this.

I almost wish I was crazy so that I could go to my psychiatrist and ask him for a pill to make it better. But I know I'm not. Or at least if I am, I know someone who's just as crazy as I am, and has random drooping eyelid, that suddenly turns into 'my eye swells shut and I get a headache and nothing will help it. Then I go to the ER and they think I'm a druggie." I had heard of cluster headaches, but I never looked into it as with the list of headaches I get, since they never mentioned it as a possibility... I saw no reason to.

After multiple doctors mentioned that they thought this was what it was (and since I was too busy convincing myself this just had to be a migraine, too afraid of what else it could be since I was scared to death) my Mom started to look it up, then remembered that a friend of my aunt's had a son with it. So, she called him for advice and instead wound up talking to the Mom.... She got a long list of everything that I was experiencing, that he had been doing the same thing, and no, no narcotic pills helped him, sometimes shots at the hospital did...

So...time to look here in hopes of finding something. I've got too much to live for, and 2 little cousins to see on Sunday who I'll wear a pirate patch over my left eye and convince them I've turned into a pirate.

Hi Pixie-

Hang in there-  i know its tough to live with the pain-  hopefully you'll link up with a good neurologist that understand clusterheadaches.  But just in case- read everything you can on this site and arm yourself with as much knowledge as you can prior to your first appt - you may be in a unique position to educate him/her- you will get all sorts of information from the links and various posters regarding treatment regimens that various sufferers have used - also check out the OUCH Website- source of great information too.  I found my current neuro on that site.  

Different folks have found different triggers- a trigger for one person may not be a trigger for another.  many folks say alcohol while in cycle brings on CH.  Others- no effect at all.  Nitroglycerin has been known to bring ha's.   Some find heat is a problem, some find cold....you get the picture

For now it may help to give you hints on what might make you feel better till the neuro appt.   Red bull has aborted many hits for me as well as others.  Melatonin at night before bed - anywhere from 6-12 mg has helped some avoid night hits.  Oxygen- aborts hits ( im not the expert in that area but many here are- they'll be along soon I'm sure)  Strong Black coffee for me at the very first sign of a hit has knocked down some serious shadows.  Also some find - including me- that having ice packs available for use when a hit comes on to press into temple and eye area - can be very helpful to get you thru the pain and sort of 'numb' the area.  Also good sleep hygenie is important to keep up your strength to fight the beast

I have not heard of small vessel disease so can't help you there.  By all means many of us are on lots of medications so no need to feel self-conscious. Prior to having CH i could have never imagined taking the types and quanitities of dosages that i have taken.  My friend who is a pharmacist was in utter shock when i told her how many mg of Verapamil I was taking-along with the daily use of triptans , indomethacin etc etc while in cycle-  She isn't so familiar with CH only migraines.
 Please list them- it may help us answer your question better re: what meds contribute to the pain in you head-  

Wishing you pf time

kelly

You will find multiple bits-and-pieces of good information here but--at this first stage in your experience of CH--I'd suggest one of these books to give you an organized over-view of the disorder.
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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These links will list the common therapies used today and the second link (Michigan) has some useful, if limited articles to help ground you.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or


 

Thank you all for the help and support. Expecally in the preventatives, I've got some melatonin supplements I've began to take, and I keep full throttle fury on hand in case of migraines. (Generally I have that around or another energy drink.) I'm rather used to educating doctors on my conditions because half of the time, they've never heard of some of them.

Okay, here's my current medicine list, minus a new medicine I'm trying out (Midrin) for the cluster headaches. This looks better in notepad D:

Celexa       40mg      9am, 9pm      Depression, OCD, PTSD
Synthroid    100mcg    9am           Hypothyroid
Zyrtec       10mg      9am,6pm,9pm   Allergies,Histamine Intolerance Syndrome, Uticaria
Pepcid       40mg      9am,9pm       Allergies
Vistaril     50mg      9am,9pm       Allergies
Nexium       40mg      9am           Gastritis, Vocal Chord Dysfunction
Nuvaring     1 Ring    Monthly       Uterine Fibroid, Menses
Relafen      750mg     9am,9pm       Arthritis
Gabitril     4mg       9am,9pm       Migraine Prevention
Moduretic    5-50mg    9am           Fluid Retention
Donnatal     16.2mg    9am,9pm       IBS
Bentyl       10mg      9am,9pm       IBS
Ketotifen    1mg       9am,9pm       Allergies, Histamine Intolerance, Uticaria
Epi pen      1 inj     PRN           Anaphylaxis
Fiorinal #3  1 Capsule PRN           Migraines, Cluster Headaches
Phenergan    50mg      PRN           Nausea, Allergies
Zofran       4mg       PRN            Severe Nausea, Vomiting
Pyridium     200mg     PRN           Interstital Cystitis
Albuterol Inhaler      PRN           Allergies
Atarax       25mg      PRN           Allergic Reaction

My body, flat out, is all sorts of screwed up, they say I have some underlying condition, however, no one can tell me what it is. Uh..here's a non-updated list of everything I got from one of the hospitals I've gone to since I was 9. It's from about a year ago, I think the only thing that's really changed is I had gallbladder disease.

GERD
Complicated Migraines
Memory Loss
Pseudotumor Cerebri
Abdominal pain
Allergy
Uticaria
Vocal Chord Dysfunction
Asthma
Allergic Rhinitis
Hypothyroidisim
Epilepsy
Abdominal Pain with Bleeding Gastritis
Chronic Depression
Chronic Interstital Cystitis
Obsessive Compulsive Disorder
Closed Lumbar Injury
Chronic Sinusitus
Post Traumatic Stress Syndrome
Bronchitis
Eczema
Anemia
Rickets
Small vessel Disease of Brain / Cerebral Small vessel disease
Osteopenia
Histamine Intolerance Syndrome

I'm also eating things with capsacin in it when I can manage to eat... in hopes maybe that will help. During an attack I drink tabasco straight from the bottle.

Topamax, Steroids, and a lot of other things aren't options as, they all cause anaphylactic reactions in me. I'm even allergic  to benadryl so... >_>;; Imitrex and any Triptan isn't an option due to the small vessel disease. I've been told flat out, it will cause a stroke that will likely kill me. x_x;

I've got a format for headache diaries that I've started up again, because from the time I was 9 I had to keep them periodically, writing down everything I eat, how much water I drink etc.

I'm also wondering if my period starting the day before the clusters did had anything to do with it, I generally have a horrible time during it and migraines normally.... but nothing like this.

I'm very tempted to start up acupuncture treatments again in hopes maybe she could help this, although it's expensive, so I'd like to try preventatives and such (as I can't be going in every day paying $100 or so x_x ) I think I'll do some research on that and see if it does help with that, it helped with a lot of other things. So far the midrin seems to help some at least... But I take it before an attack starts.

Anyways, I'll end this post now, thank you all again <3

-Mystina

pIXIE
I may have missed it somewhere in your posts, but are  you just seeing one doctor or multiple doctors for your conditions?  If multiple doctors , do all the doctors know all the meds you are taking- ie are they all in the loop ?

Pixie-elf wrote on Jun 16^th, 2008 at 10:18pm:


I sprung fully-grown from the head of Zeus.

(Is that too obscure?)

Actually I was adopted at 3 months. Don't know much of what occured before that.

~Kris

Hi Pixie,

With all of the symptoms you have, have you and your docs explored the possibility of an autoimmune disorder?  Just wondering. 

Hope you are feeling better soon.   Best of luck to you!

Jeannie

Brett,

My son was also a vacuum plunger baby.  His  cone head didn't correct until he was about 6 months old!  He also gets migraines.  He is 15 now.