Hey everyone! My name is McKenna and I am 19 years old. I started getting headaches when I was 14. I was in the International Baccalaureate program at a high school outside of my area and on the fast track to college, but had to stop the program. I started getting sick and was having headaches every single day, if not multiple times a day. I developed insomnia, partially due to pain. I was having major body pain, too. That is also when I was officially diagnosed with asthma. My immune system tanked, so I was sick with everything from kidney infections to pneumonia almost every other week. I have been tested for literally everything out there from lyme disease, leukemia, lupus, to MS. No luck.
   A little background here:
The only accident I was in was when I was 7. Me, my 2 brothers, and 2 of their friends were playing "dead man" on the trampoline. I got bounced a little too hard and got severe whiplash and broke my clavicle. I started seeing chiropractors then. Nothing too serious.

My headaches:
When they started, I was put on amitriptyline for daily chronic headaches. It didn't do squat. When they continued, I was sent to a neurologist at the Children's hospital in Denver, CO, which is one of the top. I have had two CT scans on my brain to test for MS, since I have family members with Autoimmune disorders. Luckily, that is not it. I also have had CT scans to rule out strokes. (Crazy, right?) Sometimes, when I get an "aura," the left side of my body goes numb, but that isn't as bad as it used to be. I have had MRI's and CT scans of every part of my body. I have seen multiple neurologists at Children's hospital and elsewhere. They told me I had migraines, and being 15, I believed them. First, I went on Gabapentin, but it made me slightly suicidal. No good. I have been in the ER multiple times, mostly at night, but they just would knock me out. I was prescribed morphine, but it never even touched my headaches. ( I also think they gave me a bogus dosage).. I have taken maxalt and zomeg and also sumatriptan injections, but they seem to make me sick.. Is that normal for you guys? I was put on topamax for a preventative of these "migraines" that I was having countless times per week. It actually was okay, except the brain fog. I got in three car accidents within 2 months of starting. I also had to drop out of my first semester of college. Also, I was on a heavy duty muscle relaxant that they give to people with MS. I weened myself off of both and have been just "dealing" with it since then. I can't handle it anymore.

Whenever I got these "migraines," I wasn't sensitive to light or sound. Although, the smell of peppermint was almost enough to make me vomit. I have been woken up by headaches that make me want to scream. I have had teeth pulled when I wasn't sure if the pain was actually stemming from a bad tooth. When I get them, they GENERALLY are on my right side, but pretty infrequently I will get lefty's, too. They are behind my eye and in my temple, but I also get EXTREME pain in my ear, jaw, and neck. Sometimes, that pain is worse than the eye pain. It feels like there is a rod going through my ear. It is torture. My eye will water, but not so much that it even phases me in comparison to the pain. My right nostril gets really stuffed up, too.

Recently, I moved down to Texas, temporarily. I feel as though I was sent here strictly to help me. My mom happened to meet the manager at walgreens and they got talking about me. He referred a GP doctor down here and I saw him last wednesday. He isn't a headache specialist, but he knows more about them than any neurologist I have ever been to. At first, he almost played it down to tension headaches, and I was gonna scream. Then he looked at my symptoms again and said, "cluster headaches." He gave me lidocaine nasal spray and depakote, but I called him today to get oxygen.

Honestly, I cannot say when my cycles have started and ended because I can't remember. Recently, I have been having at least 3-4 during the day time (generally kip 6), and 2-3 at night that are at least kip 6, but usually 7-8.

Here are the questions I have...

When I take the sumatriptan injection, I get really sick to my stomach and feel kind of like I can't breathe. It works after about 20 minutes, but do any of you feel that? Are there good alternatives?

Depakote: Have any of you had success with this? Also, has it ever made you really tired? Since I started, I have felt like I need to sleep 20 hours a day.

Lidocaine nasal spray: Success? I find that when I am only having a KIP 3 or 4, I can take the edge off with the nasal spray (for about 10 minutes). But I usually have k6-7, if not higher, and it doesn't seem to touch those.

Thank you for any help.

McKenna

Thank you for replying so fast! I actually do take vitamin d3 because I am deficient, although I may not be taking enough. I have taken fish oil. I also take a natural thing called migrelief. It has 200 mg of riboflavin, 180 mg of magnesium, and 50 mg of puracol (feverfew whole leaf).

As far as other options. I have been reading around here, and saw something called... Dhe maybe? That has an injectable form. And as preventatives, what meds seem to work best for the majority?

Thanks again!

McKenna

The file Bob gave you has the latest and greatest mainstream medical treatments for ch. Read that and you will know more about treating ch then 90% of the doctors you see. Welcome the board.

Joe

Welcome McKenna. I'm sorry to say your story is way too familiar with all of us. Also, your search for remedy will be long and frustrating. The beast has a tendency to morph and adapt to whatever we are taking. Still, you've been given good advice. I would strongly urge you to pursue the O2: you will need a good nonrebreather mask like the Optimask with a 3 liter bag reservoir and a high flow regulator that will put out up to 25lpm. You will either need a prescription for that, or search on-line for one. You asked about DHE. That's dihydroergotamine. It comes as an injection (DHE 45) or as a nasal spray (brand name Migranal). I have and use both imitrex and migranal alternating use. It's unusual for the imitrex to take as long as 20 minutes. The pills can and so are useless, but the injections should take effect quite quickly, say in 2-3 minutes. Also, check out the energy drink threads. Rockin' a Red Bull and hitting the high flow O2 can abort a hit in 2-3 minutes as well. Take heart, there is light in the dark tunnel. Ask any questions and we'll do our best to answer them. God bless. lance

I didn't when I used it, but I don't use it anymore.

That definitely helps! That sounds similar to what I experience, so it isnt my ideal treatment. It's good to hear that someone has experience with these medications.

Thank you!
McKenna

Have you read, and tried, the Imitrex tip at the left? It reduces the dose from 6mg (or 4) to 2-3mg, which is still effective and has far less side effects. blessings. lance

Lance- I have an appointment on Tuesday to get oxygen, but I have tried to call my doctor twice to try and get him to prescribe it sooner. I've read that it works well for pretty much everyone on here, so I am excited to be able to try it. Plus, it is so much cheaper and has virtually no side effects! I'm about to call my doctor again since I have not received a call back at all (so frustrating)...

Joe- I had read that, but I didn't stop to think that it would reduce the side effects.. (duh). I am going to try that. I noticed that whoever wrote that said they put it in their arm. Did they put it in the side? Does it have to go on the arm? I have the auto injector that can be used in multiple places, so I don't know how far the needle needs to go into the skin.

Also, is the sumatriptan tip allowed to be shared with the doc or should I just refrain from telling him? I don't know how doctors react when they hear that stuff.

Thank you!

miss_understood wrote on Sep 4^th, 2012 at 11:18pm:


It was prescribed for me almost twenty years ago and didn't do much so I discontinued it.  However, I would question its suitability here for cluster treatment, unless it is actually working for you.

I lifted a portion of an article from another thread here.



Abbott Labs agrees to pay $1.6 billion to settle Depakote cases

May 07, 2012|By Peter Frost

Abbott will pay $800 million to resolve civil allegations split among federal and state governments, $700 million in criminal penalties and $100 million to states to resolve consumer protection matters, the Abbott Park, Ill., company said Monday.

...


Under the settlement, Abbott Laboratories is:

Prohibited from making false or misleading claims about Depakote.

Prohibited from promoting Depakote for off-label uses.

Considering I just met my doctor, I think I'll hold off on telling him about the sumatriptan.

Kevin- Wow! It isn't working so far, and I'm now taking 875 mg per day.

Lance- Thank you

An update on the o2... I finally got ahold of my doc yesterday. He still wouldn't give me oxygen. I told him that I was still having 2-3 during the day, and at least 2 per night. He told me to double my depakote dosage. I asked, "what about aborting them when I get them?" he said, "Just see how the depakote helps"... I asked him if I really just had to suffer through them when they come... He said if they get worse over the weekend, just go to the ER...
Really?? The ER is so expensive. How hard is it to just prescribe oxygen? He wouldn't give me anything. I was so mad. So yesterday I doubled it, and last night I got the worst headache this week. Not looking too hopeful.

Hi Mckenna,

I started with depakote over a year and a half ago after having edema  problems with verapamil  I was up to 2000 mg a day of Depakote ,as far as I am concerned they did nothing for my headaches.  My doc was the same way about O2 I printed all the documentation From CH.com on O2 and brought it in on my last appointment I had to get pushy but he did order it  ( I also told him I was going to make my own with welding O2 and supplies bought off the Internet if he did not order it )

Good Luck  I just got my O2 it will be my first night trying it