Help with cluster headaches and migraines

[TCP]

Hi Everyone

My headaches have been worsening since December and I am now at the point that they look like migraines and cluster headaches. My eyes get pretty puffy and the pain is so intense now, with vice-like pain, with shooting nerves sensations. I have neuropathic pain, so have been on Nortriptyline and Gabapentin for 10 years. I am on a very low dose of Ivabradine (2.5mgs per day, no more as they upset my bowel) for POTS and nothing else. The head pain can go on for days and can fluctuate. Last week I had it for 4 days and then 4 days break and it's been back again since Tuesday. I have tried to see my GP many times this year but have been too well to see them and also losing my dad, put my own health and welfare on hold. I am attempting to go tomorrow and see someone at the surgery. I have read that with EDS/POTS there is a higher incidence of migraine-type headaches because of abnormal cerebral vasculature. I know my bowel is implicated somewhere a long the line, too. 

Has anyone experienced these headaches, which render me totally incapacitated for days? Has anyone found relief with meds and other pro-active therapies and tips? I cannot tolerate codeine or morphine. I don't eat many of the food triggers, although have have to stop eating garlic and onions, but I don't drink, smoke, eat dairy or processed foods. 

Any help would be much appreciated

TCP

[Urkittenme]

My dad has severe cluster headaches. He would often bang his head against the wall and sometimes curl up in a ball sweating because the pain was so bad. However he gets them 3 times a day or more, not a continuous headache. If that is what you are experiencing then I am so sorry. Have you tried oxygen? I can ask him what he does now to manage the pain if you'd like. I know that he uses medical marijuana and believes it is the only thing that truly helps, and he's tried many many things over the years.

[Roxy]

I use oxygen (rate of flow is at 10-15 for 20 minutes off and on) and that helps if I catch it early about 50 percent of the time, if not they use Dilaudid, Ketamine, Benadryl, and Toradol ( or any combination of some or all of those meds). I am on my second round of Botox and am still not sure if it is helping. So sorry about your father.

[Lily]

My new neurologist I got when I moved to my current town suggested I try Magnesium and vitamin B2, 400 mg/day of each.  That prevented migraines quite handily.  Since being on fluorinef, though, I have had to increase my dose.  Other than that, Excedrin and a nap worked for a while, then I went to Zomig when that stopped working.  Mine are caused by weather, specifically storms and frontal boundaries but not all of them.  If you haven't tried keeping a diary, you might find the data helpful.  Write down everything you eat, the weather, stress, how well you slept, and anything else you can think of that might be a trigger, each day.  And note also which days you have headaches.  Analysis of that data might yield a pattern worth testing, like eliminating a food or something.

[Jan]

Could it be the Ivabradine causing the headaches?

 

[TCP]

I stopped the Ivabradine and fruit....no belly bloating stopping the fruit and as yet NO migraines! 

PS My GP thought cluster/migraine and gave me a migraine med and also to take 3 Naproxin, anti-inflammatories 3x per day. I took one that evening and had the worse heartburn and indigestion pain ever. I went to bed at midnight and couldn't sleep until 2 pm the next day. I was ill for 5 days will fluid running from my nose and flu-like symptoms, plus many other symptoms. 

[TCP]

On 2017-4-28 at 7:38 PM, Jan said:

Could it be the Ivabradine causing the headaches?

It could well have been that although I have been on it quite a while now maybe 2-3 years. I came off it anyway and also stopped fruit at the same time. No pain so far!