Diagnosis

[littlemountain]

Hi. I'm going through what seems like a cluster period. I was diagnosed a few years ago by my family doctor and a neurologist but I've always had a few atypical symptoms, I was wondering what people here think.

My cluster periods are fairly random. They appear at all times of the year, although spring and fall are somewhat more common. They sometimes follow a 15 month cycle, but my recent bout comes eight months after my last one last September. 

I get shadows. Then the pain comes fairly rapidly. Sometimes coffee or energy drinks and eating can abort it.

Imitrex autoinjectors usually work. Oxygen at best just takes the edge off, even at 25  LPM with the ch mask. Verapamil seems to work at 360mg and topomax at 100mg.

I always get the pain in the right side behind my right eye and it radiates out from there.

Here's where I'm different. I never get the tearing or drooping, although my nose gets stuffy. In fact my nose usually feels like a balloon is being inflated inside of it. My attacks are fairly regular throughout the day and night but they last forever, and I mean forever, I usually get one at 3 pm and it won't let up until 3 am.

[spiny]

Wow. That length of time for an attack is different. Most don't go over 3 hours, but some do. Do you need to move around or do you need quiet and dark?

There is a thread on the Clusterbusters Board that describes how to use your O2 to the best advantage. Ii is work actually. How are you using your O2?

You need not show all the symptoms to have CH. But you must show some of them. I gather that your neuro did a scan of your head? And has anyone given you Indomethacin for a trial run to check for Hemicrania? Some of your symptoms fit that type of condition as well. Like the length of your hits. But you do respond to standard CH meds. Hemicrania does not respond to Imitrex usually. So, the question remains.

Many Chers take up to 960mg of Verapamil. If you have low blood pressure that prohibits a high dose. Perhaps your neuro could try upping the dose for you if your BP is ok at the 360 you are now taking.

I would suggest that you also read the D3 Regimen in the Clusterbuster Fiiles as well. It has been a huge help for many of us. Simple and easy to try for a few weeks to see if it helps you.

ATB

[littlemountain]

I've tried hyperventilation with oxygen, deep breathing, proper posture, using it for longer than half an hour. Sometimes it works. Most of the time it just seems like the attack is just too strong.

I'm on the d3 with all the co factors. Last September it seemed to help take off some of the edge, as none of the attacks were really bad, zolmitriptan tablets or oxygen quickly aborted the attacks. This time though, it might just be reducing the frequency of the attacks, but the intensity is quite high.

I usually don't like moving around during an attack. Often I want to lay down, even though this increases the pain. During this latest cluster, I've also been prone to random bouts of nausea, either when I'm in an attack or when I'm not, and they're quite intense, I've vomited on a few occasions now, and I'm the kind of person who will avoid vomiting at all costs.

 

[CHfather]

I think spiny is right that there's no harm in trying indomethacin, mostly because the ineffectiveness of oxygen at least suggests that it could be something other than CH.  Like CH, hemicranias are tricky -- sometimes they respond to CH meds such as triptans, and other times they don't. 

[littlemountain]

Thanks for suggestion Spiny and CHfather. I have an appointment with my family doctor tomorrow, who may be open to this idea. In Canada here, or at least Ontario, seeing a neurologist is a rare occasion, so I doubt I'll be passing the idea by them anytime soon.

This is really my first time using topamax at high doses. But I do remember having pressure in my nose last time I was on it and when I was just on verapamil. The difference is that now the pressure moves from my nose to my ears and my neck and my skull. And it only seems to build up in the afternoon. It's a very odd sensation. It's better then the headache but it's very distressing at the same time.

[spiny]

Most people that I know who have taken Topamax refer to it as Dopamax and hate it. My neuro prescribed it for me and told me to check my internet sources to see how it is helping. Well, it causes weight loss and I was already down to a stick figure. Never took it. Especially after reading that a lot of people really hate it.

I did not see the pressure issues mentioned when I checked for side effects on the Net just now. But I read over just the main side effects. Didn't go to the other ones that only affect a few people. Please bring this up when you see your doctor. My only side affect from Verap was blood pressure went too low. And dry mouth.

Your doctor should be able and willing to let you try the Indomethacin. Definitely explain your situation and ask!! 

Now, I will cross my fingers that you get it and it works for you.  If not, then you will have confirmation that it is not hemicrania. If that is the case. if your BP is good you could increase the Verap. Chers take very large doses of it for relief. For CH, you might find that more Verap. allows you to taper off the Topamax and feel better.

ATB

[littlemountain]

Ok, thanks for the suggestion Spiny, I really appreciate it. Hopefully the doctor can help me. He usually boosts my spirits. I don't think the topamax is doing much anymore, had two bad hits today already. Ugh, so tired...

[littlemountain]

Saw my doc today. He really didn't know what to do as my symptoms are so atypical. The pressure was becoming constant, I was being hit with waves of nausea, just felt like the topamax was blocking out endless attacks. He has me on a prednisone taper for now which has given me some peace. Thankfully, I have managed to set an appointment with a neurologist I saw last January for tomorrow. So that's made me quite happy. I've made a bunch of notes, ready to have him make a diagnosis.

[littlemountain]

I mentioned the indomethacin btw but long story short was I had to go the ER for the pressure and they put me on the prednisone which is also a powerful anti inflammatory. I don't think my doctor would've been comfortable with it anyways, but will see what this neurologist has to say about the pressure.

[spiny]

Way to go LM!!

Yup, that pred will buy you some PF time. Used sparingly a few times a year it is wonderful.

Did they ever do a scan of your head? That is so very important for this disease. Basically it rules out other stuff. Please push for one. Push hard too!

We had a Canadian who had to wait 6 months or so to see a Neuro and then another long wait for the scan. It was not CH. He had surgery and became PF. Wouldn't that be a blessing?

While I admire Canada for insuring all, I hate their system of wait, wait, wait. And the fact that they will put you in the hospital for something, but not do any testing to diagnosis the problem.

Best of luck and please keep us posted on the outcome.

[littlemountain]

So I saw the neurologist today. He did not seem to know what the pressure could be, though he seemed confident it would resolve itself. He told me to keep up the prednisone taper, the topomax 100 mg, and verapamil 320 mg. He actually brought up indomethacin on his own but thought it might not be appropriate at the moment with all the other stuff I'm on. He has booked me for an appointment in early July to try some Botox injections, as he commented that my symptoms have shifted somewhat towards more migraine-like ones.

It would have been nice to get a firmer diagnosis. I wish would've emphasized the pressure more, I have a bad habit of downplaying my symptoms. For now at least I have seven days off prednisone and I can finally sleep. I also have anti anxiety pills now so my mind isn't wandering too far to dark places. I'm just gonna use this time to rest, and hopefully heal. The headaches have abated since Tuesday (knock on wood). I just hope things get better, I literally wasn't getting sleep because of the pressure.

[littlemountain]

Oh, and I did have an MRI done just before all of this started and it showed nothing out of the ordinary.