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Yammy

HELP!

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Hello everyone - I am new here! I have been suffering from headaches ever since I was 14 years old and now I am 24. My headaches just keep getting worse and its making my life very complicated. I had a concussion in 2011 and after that my headaches got out of control - I started having different symptoms which is quite different from a migraine headache. I suffer from chronic headaches, and I usually get a one sided headache with this burning sensation in my ear and back of my ear. I usually get these horrible headaches when I am sleeping. My attack ranges from 3 hours to days. I feel very restless and frustrated during my attack because the pain is so intense; however, I prefer to sit still. My one side of head pounds during my attacks which is extremely excruciating. My family doctor does not believe me when I explain to him about my pain - he thinks I am too young to have these kind of miserable headaches. After many requests, he referred me to a neurologist; however, it's been 6 months that I am waiting for my appointment.

I did some research on cluster headaches and hemicrania continua - I realized that the symptoms are very similar and now I am not sure if I am suffering from CH or HC - any help would be appreciated!

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You really need a neurologist, one who has extra training in, and specializes in headache disorders to sort this out. In the mean time you could take the "cluster quiz" at clusterheadaches.com to see how well it fits your symptoms.

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Thanks for your prompt reply - yes I totally agree with you that I need a neurologist!! I did take the quiz and I do have CH symptoms.

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Hi Yammy, agreed with DM that an actual headache specialist is your best bet for an accurate diagnosis (NOT a garden variety neurologist - they typically don't know jack).

Of course the guy you've been waiting 6 months for very well may be a headache specialist, since a significant percentage of them are negligent about making the patients with the most severe cases wait so long - and with active CH it is an emergency level condition indeed.

My family doctor does not believe me when I explain to him about my pain - he thinks I am too young to have these kind of miserable headaches

Speaking of A-HOLES! Grrr  >:(

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Hi Bejeeber - thanks for your concerns! Honestly, I am so frustrated with these dumb doctors bc they think I am exaggerating or making up stories!! The doctor that I am waiting for is actually a neuropsychiatrist - my family doctor thinks it would be a good idea to see a neuropsychiatrist bc I  had post-concussion symptoms.

Today my headache lasted for 14 hours   :( :( :(

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I'd get on the D3 regimine right away. It's helped me reduce the severity and number of headaches however as I post this I'm sitting here hooked up to my Clustermask and O2 tank. I'm hoping I have enough oxygen to get me through the morning then I'm off for refills.

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What FunGuy said about the CH, HC and Indomethacin.

Sorry, but I'm thinking you could still benefit from a diagnosis by a headache specialist, if you could go around your lousy sounding doctor and locate one in your area.

There's this OUCH list of "sufferer recommended doctors":

http://www.ouch-us.org/chgeneral/doctors.htm

The list isn't iron clad or fool proof, but there might be something there...

Also if you feel like mentioning here what area you're in, it's possible someone may know of a good neuro there and respond.

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Have you tried oxygen to abort your attacks?

It is BY FAR our number one friend. It must be high flow oxygen with a non rebreather mask.

I cant overstate how 02 has saved my sanity. It normally aborts an attack in just a few minutes.

Dan

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Hi Yammy,

In addition to Hipshots O2 post, I would add try energy drinks and Melatonin.

Energy drink containing Taurine with O2 or coffee if you can't take the E. The combo helps many.

Melatonin at bedtime for nighttime hits. Most start with ~9mg at bedtime. It can postpone the first hit and make the hits milder when they come.

Sorry it is so rough. Dr's should have to suffer with this condition for about 3 months without help just to understand what their patients are going through! >:(

Maybe your Dr could give you a script for a few  Indomethacin just to see if they work for you? It could provide a quick answer as to which one it is. Sort of like take one Nitroglycerin and see if you get a CH. Of course there might be medical reasons not to try either. But I did think of requesting Nitro. once to prove to my idiot Dr. that I do have CH!!!! :o

spiny

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I really appreciate all your suggestions guys! I live in Toronto, Canada - doctors are very slow in here, that's why I haven't had a correct diagnosis yet.

I will visit my doctor soon and request him to refer me to another neurologist.

Dan, thanks for mentioning 02 - I haven't tried 02 but I have heard that its effective in treating headaches. Unfortunately, I can't get an oxygen tank without a doctor's prescription. I did mention about 02 to my doctor but he ignored it.

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NotThisAgain.gif

If it's like this, definitely get a diagnosis and follow the good advice above.

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I had a family member who lived in Toronto for ~ a year. The hospital will give you lots of pain meds, but do very little to find out what the problem is and fix it!!!!! That was their experience anyway.

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Thanks FG and Spiny for mentioning Indomethacin - I will mention to my doctor to prescribe me Indomethacin and I hope he LISTENS!! I totally agree how doctors are becoming insensitive jerks  >:(

I actually tried red bull once and it did not help me much but I will definitely try the combo and melatonin :)

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Spiny, you are right doctors love prescribing medicines but they don't fix the actual problem.

By the way my doctor prescribed Frova for me and I had some success with it.

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Do a little research regarding oxygen. Print some literature to take with you to your next doctors visit. It is WELL documented to be the number one cluster abortive.

Some folks use welding oxygen. So long as you use between 15 and 25 litters per minute with the right mask, it doesn't make any difference.

Go to the MENU on the left of the homepage and scroll to OXYGEN.

Just let your doctor know that you know what you are talking about!

Best wishes

Dan

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Indomethacin is a good test if he will give it to you.

You say you had some success with FROVA (Frovatriptan). This is a class of medications called triptans. CH patients get little help from the pill forms, we need the injectable form, Imitrex injections (Sumitriptan). If that works, it should become your number 2 abortive treatment, behind oxygen. But again, it does not sound like a clear cut case of CH, thus the importance of a good headache specialist to sort things out. It could be a life threatening condition that is treatable (unlike CH, which is not life threatening and really has no "we can fix that" treatment).

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You can find quick links to the articles about oxygen here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

My suggestion would be to send them to your doctor's office before your visit.  Maybe someone will look at them, maybe they won't, but you will have them on notice that you know what you are talking about. (I remember one person who sent them to her doctor's office, and the doctor paid no attention to them, but the nurse practitioner in the office did -- and the nurse practitioner got the O2 for the patient.)

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Thank you so much for all your help guys! I really appreciate it :) I'll definitely follow the above suggestions bc the pain that I go through is just awful...  :(

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my family doctor thinks it would be a good idea to see a neuropsychiatrist bc I  had post-concussion symptoms.

Today my headache lasted for 14 hours   :( :( :(

i am very sorry that your here :'( :'( :'(...hopefully you will get a doc that specializes in headache disorders and will diagnose your specific condition correct...wishing you nothing but the best.....Lenny

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Thank you so much for all your help guys! I really appreciate it :) I'll definitely follow the above suggestions bc the pain that I go through is just awful...  :(

Growing frustrated and frustrateder here that the medical profession hasn't provided you with an expert diagnosis yet - that just plain blows.

In the meantime while you're working on getting that diagnosis ASAP, I suppose your plan of trying some of the treatments suggested above might provide some clues (but not necessarily conclusive evidence) as to the classification of the attacks you're suffering from, depending on how you respond.

I would hope that you've had an MRI since the concussion? I'm guessing that'd be pretty important at this stage! Please continue to keep us apprised, I feel for you, wish I could offer more treatment suggestions, and am joining with the other fine people here in pulling for you to get some speedy answers regarding whether this is Hemicrania Continua or what, and to get some major relief!

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Thanks Bejeeber for being so kind and helpful! I am so glad I joined clusterbusters because everyone is so understanding and supportive in here. Only people that suffer headaches know what it is like. It is hard to find doctors that understand what we suffer. The technology today should be able to tell us why some suffer like this and others have never had one headache in their life. It is a shame we are medicated instead of cured. I don't want to sound like I feel sorry for myself, there are others with much worse illnesses.

Yesterday I went to see a different doctor and he immediately sent me to the emergency for an urgent assessment because I had a horrible pain in my left eye. I felt as if someone was stabbing me in the eye. I was seen by the ER doctor and he could not figure out what the problem is - I was given different types of medicines and IV therapy but nothing helped I was still in pain! Finally, I was given a referral letter for a neurologist and now I am waiting for my appointment and hopefully it'll be soon! Until I get to see the neurologist I'll definitely follow the above suggestions and I really appreciate them!! Thanks once again everyone! - its a pleasure to be part of clusterbusters!! :)

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In the meantime are you not able to get a Clustermask, regulator and use welders oxygen? I would give that a try and not even mention it to my doctor and right now it sounds like your doctor is MIA.

My doctor who is just a general doctor wouldn't prescribe me oxygen either. He doesn't understand CH. So I had to take the bull by the horns and go get my own oxygen.

I looked on the Internet in Canada for welders supply and there were all sorts of places. I would think you could rent or buy a tank. You just can't tell them why you want it. Luckily my oxygen guy doesn't ask and I don't tell and after a few years of business I don't think he would care.

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