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With my two feet back in clusterland


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Hello Friends,

I enjoyed my 1,5 month remission from beginning of April until half May. But its now the 4th week(end) in a row I am dealing with this fantastic condition (CH) and his/her ugly sister (migraine).

This weekend was especially brutal. As usual, the pain started at the end of the week when I got any sense of the weekend and worked itself up gradually during the next hours. On Friday afternoon I got the first attack followed by 3 others. They were damn painful but luckily took only 10-15 minutes. Once in the evening, the attacks stopped but the background pain was still getting worse over the entire half of my head. Before going to sleep, I had to take one Zomig pill which took away most of the pain but damn... my right eye kept hurting like hell. That nerve kept firing non-stop and it felt like a wasp or a hornet had sting me straight into my eye. Could not sleep the entire night and went on like this for an entire Saturday. Oxygen brought it down for a few hours but then it came back. 

Saturday night 2 am still no improvement - the nerve kept firing like it was pouring acid straight behind my eye. I wanted to go to the emergency for a nerve block but I thought trying another Zomig pill first to see if that helps. Luckily this one helped and could finally get some sleep.

Sunday was quiet but in the early evening, it was then the turn of migraine to show what she was capable of. Now for a change on the other side of the head. As usual head pain not so intense but damn... the pressure on my chest, the nausea and the pain in my stomach and bowels seem like I have a highest degree flue... I can barley breath. 

Now Monday afternoon, this one is finally going away  but it goes very slow - one two steps forward and one step back - and look forward to finally a few good days.

I am looking forward for my next remission in September (if CH plays it along the rules) that should give me 1 to 1,5 month of relief. In the meantime I will have to try to sail trough this shit for the next few months.

But I also received some good news. Just heard that here since January of this year, CH patients can get a BPR demand valve for free. So I am going to pick up mine and look forward to use it !

Thanks for reading and all the best !



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  • 2 weeks later...
On 6/17/2019 at 7:16 AM, Siegfried said:

the pressure on my chest, the nausea and the pain in my stomach and bowels seem like I have a highest degree flue... I can barley breath. 

This! This is exactly what I've been experiencing as I've been tapering off of Verapamil. Stomach all knotted up, felt like I most certainly needed to visit the toilet to purge from somewhere, nope. Chest real heavy, get the sensation like I'm running out of breath.

I check my Fitbit heart rate monitor and it's at 70-110 bpm while at rest. 

The sensation continues to build into an attack. It happens every time preceding an attack now

My normal resting heart rate is 55bpm.



Edited by dmlonghorn
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Hi dmlonghorn,

That is interesting it gives exactly the same symptoms. I was only a short time on verapamil around a year ago. My symptoms is pure migraine and I can't stand it.... especially this takes +48 hours when untreated. You have high fluctuations in your hart rate which is indeed verapamil related

My CH is kind of weird. It starts always with a glowing and full ear and some pain in the eye but the first hours I can not yet determine what it is going to be. If the pain increases but stays diffuse and I start to feel nausea and feel I do not want to stay up anymore and can not concentrate on anything, then I know its the migraine. But if the nausea not come and I start to have short spikes of very strong pain around my eye and forehead and start to rock back and forward or walk around.. then its CH. A CH cycle usually takes around 3-4 days with nearly constant low-level pain but Zomig can stop them completely. Migraine usually takes 36 hours.

Are you a migraine sufferer as well ?


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