New & Desperate

krisd71 · September 17, 2017

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

ClusterHeadSurvivor · September 17, 2017

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

spiny · September 18, 2017

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

krisd71 · September 18, 2017

@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

CHfather · September 18, 2017

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.

krisd71 · September 18, 2017