Hi there, My name is Lauren - I'm 34 - I live in New Mexico and I'm a Nurse Midwife. Im engaged, have a puppy and two cats and when Im not in a cluster I really enjoy being active and outside but lately I cant do anything because all physical activity triggers clusters.....Does anyone else get that with their heart rate going up? Im so sad I cant run or work out or hike or do anything that makes me feel good .... :( :( :( :( Even a hot bath kills me.... I've had cluster headaches for 10 years and they have always sucked big time but only lasted for a month or two - this year I am really really suffering - I don't know if its the stress of planning a wedding + being an essential healthcare worker during COVID-19 plus we bought a house....have a puppy.... (I could go on dude) #$%^&*( Or If this year just is different for some other reason. I am about to try the anti-inflammatory regimen with d3 and all the other supplements. I'm learning more about oxygen regulators and masks and just bought a 25L/min regulator and the kit from clusterheadache.com with the special mask. I've always just managed with injections and avoiding alcohol and heat and exercise but this year is way way way different. Some days I get 6 headaches a day, some days I get 2 a day some days im just in constant low level pain terrified im about to get a headache  - I have a constant what I call "ticking" lingering headache where my clusters are every day I guess thats what people call shadowing? I'm getting depressed and hopeless. I'm moving from topiramate to gabapentin and verapamil this week too. Just had a dr's appt....Looking into the gammacore also. I've had an occipital nerve block this month - that didn't do shit ....I'm so exhausted and I can hardly keep up at work / in life. I want to have a baby soon but Im scared my body is too broken..... everything is just starting to look dark. Anyways thanks for listening. It feels good to just type this all out. How much of a role do you all think stress plays in clusters and what med regimens do you guys find helpful? Does anyone find the gammacore useful? Looking forward to connecting. Im really starting to lose it and feel alone..... My fiance is amazing but he can only do so much. - Lauren

G'day Lauren, and welcome.  Good to hear you have a doctor who is at least trying to help.  Not all are so lucky.

It's also nice you're setting up an O2 system because it really is the number one choice for so many ClusterHeads.  There's a button on the left side of your screen marked  Oxygen Info  and this might help a little as well.

As to stress,  for some it's a major trigger while for others it serves only to relieve things.  I had one cycle broken completely when my dear father passed away suddenly and another when I was busy being shot at.

I can't recommend either as a cure. 

Same goes for hot baths.  For some it's hell and for others it's heaven and goes only to show that none of us are quite alike.

Around here people like your fiance are referred to as supporters and we reckon they're better than gold so please give him our regards.

Full steam ahead and damn the torpedoes!

Brian down under.

Welcome Lauren,

It sounds like you are taking ownership if your CH and that is a great thing.

Please make sure your Doctor is aware that you are trying the D3 Regimen, especially if you are going on Verapamil. The D3 was a major life changer for me and is well worth trying, but stick to the letter of Batch’s regime.

I have been using gammaCore since 2012 with reasonable success and no side effects whatsoever.

For me, D3 is the preventative, O2 my primary abortive, but when I am traveling, or just out and about, gammaCore is the abortive. It’s big advantage is portability.

If you get one, make sure you have a letter from your Doctor to hand to airport authorities...otherwise you can get a lot of hassle otherwise.

Your Fiance deserves great credit. Supporters are keepers.

Keep us posted.

Peter.

Hey again! Thanks for the support - I've been doing the anti-inflammatory and D3 regimen for 9 days. I decided not to take verapamil and am only taking what is a probably sub-therapuetic dose of 100mg of gabapentin every night just to help my brain stay calm at night when I tend to get headaches. Ill probably stop it soon.

The best news is that the week I started D3 / supplements I had only 2 headaches and this week I have had NONE. Cautiously optimistic over here. Hoping for the best. Have been in touch with Batch and he is helping me. I cant believe how kind and helpful he is. I feel so thankful and happy I found this group. Hope you guys are also doing well - thanks for the warm welcome and the information shared thus far. How often do you guys check your d levels? Luckily I have access to lab where I work and can order my own tests...

Lastly - yes - I agree - supporters are the best - he's so fast at setting up my oxygen - stabbing me with sumitriptan and just sitting with me and saying nothing and just holding my hand during a cluster (or listening to me yell ha) I'm lucky. Send good vibes this hopeful pattern keeps up - I dont want clusters at my wedding in 37 days   :-/ ;D - LZ