solace409

CHfather... I will look around to find ph strips. I find this part of the equation interesting as I wasn't REGULARLY drinking the lemon water until day 7 on the regimen. HAs were back on day 6 & 7 (after 3 day break) but now pf day 8-14. I also wonder about the D3 connection. I know there are many theories about many possible causes but I will say this... my CH started during a very dark, rainy spring and following a long midwest US winter. I was probably indoors more this past year than I can ever remember. There was very little sun this spring until the last few weeks. Thank you! I sincerely appreciate your knowledge and support.

Thanks so much for the responses. Dave... I so hope you find lasting relief. I'm sorry you've had such a hard time. I have been more and more hopeful after each passing pf day, but keep wondering if this is end of cycle and what lies ahead. This affliction is insane and it's hard to know what to do at this point. Lynn... My first HA was similar and I know I'll never forget it either. Of course, feeling it again and again and again doesn't allow you to forget it!!! Leslie... your info is helpful. Both of your stories make me feel like I should be more proactive in the prevention area instead of waiting for it to come back and losing time with my kids/life in general. Plus, it's just scary to live with this hanging over you... never knowing when it will be back and how severe it will be. I sleep with an insulated bag next to my bed... it has cold packs and a Red Bull in it. I am holding off on O2 till I see Neuro in July to see if I can get medically (that will change if HAs come back). I also take the RB with me wherever I go now. However, I'm still afraid I'm gonna get an attack that is too intense for RB to work. A few weeks ago I was watching one of my boy's little league games and the RB was in the car on the other side of the fields. I got some pangs and panicked that I would never make it to the car. I was freaking out that an attack could be witnessed by my kids and everyone there. Pangs subsided and turned out ok but I don't know how you all have lived with this year after year. My heart goes out to all.

I wonder if some of you who have suffered with episodic CHs would be able to answer some questions... -Do you have signs that your cycle is ending and what are they? -Do you still get “pangs” or even shadows when you’re not in cycle? -How does it start when it returns? -Do you remember the first cycle of your life? Mine has been very mild compared to your stories and I’m wondering if that is expected and then it gets worse over the years? (I have read that some of the meds are suspected to cause more frequency/severity, that some people have long remissions and some have changed from episodic to chronic). Last time I wrote the HAs had come back after 3 days pf but I've now been 6 days pf with only the D3/cal/mag/fish oil regimen. I'm wondering if it's the regimen or end of cycle. I definitely feel like it's the regimen (thank you, CHfather for suggestion to try this!!!!) If things continue to go well and I get brave enough, I will bring the supplements down to a maintenance level and report my experience in case this info can help others (I know the official "reporting" on this should go to ch.com and I will get over there at some point). Thank you for your input and support. So grateful!

Hello fine folks, Thank you to all who gave important info and words of support when I joined last week. I'm hoping to be able to be helpful to others at some point! I started the D3/cal/fish oil regimen a week ago and have seen some improvement (although today was rough so now wondering). I think I should wait to post any details, though, as I have not been officially diagnosed. I will wait till after seeing Neuro (keeping a diary so info will not be forgotten from day one). I was told by phone that MRI/CT was normal aside from "white matter" showing I'm having chronic pain (uh, yeah, doc... remember I mentioned that when begging not to have to wait 6 months for Neuro appointment!!!!). I'm sure you'll all relate to this... I called the Neuro's office the GP was referring me to as I wanted to see if this doc had any familiarity with CH or was even a headache specialist. Person answering asked me to repeat "ch" and then said "Are you SURE they're not migraines?" not once but twice!! I will be going to a different Neuro (one from the OUCH list hopefully). I get that this condition is rare and docs don't know about it but my GP knew a little. The first thing you always read is that CHs are most painful disorder known to humankind. Just seems to me that that in itself should provoke some sense of urgency... just sayin'... My best to all...

I will absolutely be sticking around!!! I forgot to mention in the update that I did order the seeds. Will post anything relevant to help others. I actually feel guilty about getting all this help so early on when others have suffered so much. You only have to feel that pain once to know that this will ruin your life/your husband's life/your kids' lives if you cannot find treatment that helps. I still can't believe people have lived with this for years!!! I seriously do not know how...

You guys are AMAZING!!!!!!!!!!!! I had shadows throughout the night then it started to break through this morning. I drank a red bull... omigosh... it worked!!!! I am forever grateful (have I said that already?) I also started the D3/cal/fish oil last night... as CHfather said... "why not?" on this. Although just realized I bought "calcium carbonate" instead of "calcium citrate" but I saw that conversation somewhere and will look it up again to see if it's ok. (Head was still not clear last night) My husband is going to help me with the oxygen. And I'll be continuing with the diagnosis process. I'm going to call about the Neuro and check into going to one of those on the list. I had the MRI/CT scan on Friday last week so I'm guessing doc should have results... GP said he had to do this BEFORE referring to Neuro. Guess Neuro will use this as well so doesn't matter. I was in despair yesterday until all of you showed me there is hope in dealing with this. I think the amount of despair correlates directly to amount of pain of that last attack! Thank you for taking the time for me yesterday. My latest fear is that one of my boys will develop this at some point... think I will look for info/stats on that here. At least I know there is hope if they do.

Thank you so much Alleyoop!!! Your reply is so helpful. Everyone has been so helpful today. I guess I am in panic mode but this is starting to calm me down a bit. I am currently living in Northern Indiana (could go to Elkhart, Goshen, South Bend, Mishawaka or even Fort Wayne). Received a phone call that my doc has changed Neuro he was planning to send me to (hoping that means the new one is headache specialist or even familiar with CH, but need to call tomorrow to see). If not, don't want to waste time. Have to take my boy to baseball... will check back later... Thanks again to all! So grateful!

CHfather... are you also a CH sufferer? I made an assumption based on your username I guess. Thought you were mainly here on behalf of your daughter. Very impressed with your knowlege... are you taking the D3/cal/omega 3? Is it working for you?

Thebb... for the first time in my life I don't want to be special. This sux!!!!!

Hipshot... thanks for sound (and free!) advice, encouraging words, and yes, even the humor!

Thank you, thebb. Your info is helpful. Unfortunately, my quiz results are not favorable but I figured that would be the case. Will keep reading/learning.

Sorry... that should have been "CHfather"... being in pain/up most of night makes it hard to think and type straight!

DHfather, Thank you for your reply. Your info makes good sense. I will spend time reading and will likely start the supplements tonight if possible. I will post how it goes. P.S. Can't imagine how incredibly difficult it must have been to watch your child in this kind of pain. Hope she is painfree now.

I am new to all of this… to the site and to the headaches. I didn’t know cluster headaches existed before needing to research what might be happening to me. Your stories made me cry. I can’t believe people have had to suffer for years on end with this. Thank goodness for this site. I pray for those who haven’t found it yet. I have just begun seeing a GP, have been reading on this/other sites like mad, and am trying not to go down the wrong path. Although not officially diagnosed yet, I wondered if anyone could help with insights at this stage. I can’t find any other explanation that fits, although the doc seems to want to exhaust every other idea before seriously considering CHs. He ordered MRI/CT Scan and gave me Vicodin (doesn’t work). He only agreed to refer to Neuro after I begged and told him I could not wait 6 months. He said I’d have to be diagnosed before I’d be able to get O2. I’m living in terror everyday of the next bad attack. I’m a 47 yr old mom of two awesome little boys. I don’t smoke and have a few drinks maybe 6-7 times per year nowadays. Early on, I thought maybe I was having perimenopausal migraines but I’ve read migraines don’t just last 20 minutes and have been told this is unlikely given I’ve never had them before. Here is my experience (please forgive amount of detail as I’m not sure what is relevant): March 2011 - woke up around 2 am with the worst headache/pain behind left eye. Never felt this kind of pain before. Only had Advil in the house. Only lasted about 20 minutes but I was troubled at the kind of pain and what else might be going on. Two weeks later – put kids on bus and laid back down to sleep around 7:10 am, woke about 8:30 with same terrible left eye pain, radiates down face/jaw/neck, has a burning quality, excruciating! but over in 30 minutes One week later – same as above, started trying Excedrin Xtra Strength (doesn’t work) By Mid-April – getting them every other day, same time every day which is after I lay back down in morning and they wake me up, also getting “shadows” as I believe they are called at different times of day/night, now noticing nasal congestion on left side, most last 30 – 45 minutes April 23 – terrible headache at midnight, lasted about 2 hours, worst one yet. I drank alcohol earlier in evening. Couldn’t lie still, had to wring hands/kick legs (very scary), could feel/hear my pulse pounding in my ears, starting to worry my kids are going to witness this at some point… after this one, continues every other day, back to that morning schedule, always left side only May 1 – only 20 minute headache but have had neck stiffness on left side with knot in my left shoulder for a few days May 2 – first time they came two consecutive days, total attack was 3 ½ hours but there was a break so I believe this was two, now this is worst by far… if my husband was home I probably would have gone to the ER, again wringing hands/kicking legs, pulling my hair, can’t lie still and the pain is unbearable I decided to start going to bed at a decent time at night and stop laying back down after the kids get on the bus (amazing how sheer terror makes it easy to alter entrenched habits). I went 5 days without a headache, although still had shadows for several days and wondered if it was remission. Then Happy Mother’s Day… headache woke me in morning but ended up being very mild and only 30 minutes. I am now feeling desperate as I woke at 11:15 pm last night with another really bad attack. I am desperate to stop this. Some questions… 1) Anyone think this could be something other than CHs? 2) Is altering my sleep pattern and having them stop for 5 days consistent with CHs? If so, why would they come back if I’ve stayed on the altered schedule? 3) If I’m lucky enough to get a remission soon, can I expect it to last for years this first time or is everyone different? Should I expect these to come back next Spring? Or could I be chronic from onset? 4) Although I’m fine with doc using MRI/CT scan to rule things out, if I’m diagnosed with CHs, I’m determined NOT to begin the traditional drugs. Would the recommended prevention strategies be the same for someone in this early stage as those of you who’ve suffered so long? Which would make the most sense to start with? I would rather try something right now that has a very good chance of working (RC seeds?) than prolong trying things that may/may not help. 5) Does anyone know of others who have stopped CHs after only one first cycle and what was used? Thank you in advance for any insights/advice you can share. I will be looking for the best ways to give back or “pay it forward” no matter how this turns out. I’m so grateful for this site and the help you are providing! So sad for all the suffering, so happy for those who have found relief!