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Everything posted by greeneyes87

  1. I have been on a steady dose of Verapamil 80mg 3 times a day....which oddly enough have helped keep the CH at bay for the most part. I still get migraines that I take a monthly Emgality shot for. Dr. Also has me on Venlafaxine. I just recently upped my verapamil dose to 120 mg morning and night at 80mg in afternoon. The past couple days I have been soooo tired. Has anyone noticed verapamil making them sleepy?
  2. I haven't posted anything here for a while but last night I got hit with a bad attack that lasted about 45 min. First one I have had in 3 weeks...I was hoping maybe they had gone into remission... anyways my attack comes in waves of intensity and at one point inbetween my whole face started tingling and went numb. That is the first time this has happened to my WHOLE face... has anybody else experienced this.
  3. Thanks as always Batch. I guess I am a crusader rabbit of sorts and my husband thought I was crazy for stopping something that seemed to be helping. The new neuro did tell me to stop the verapamil. He did say I could continue the D3 if I wanted to. I really did just stop to see if the headaches would start coming back the way they were and also to have a clean slate going in to see this dr and starting anything new as a preventative. He did give me very specific instructions on my dosage. I can only up it every 2 weeks to try and avoid those allergic reactions. This week I have felt awful. I have not gotten any severe long hits but I have pressure that lasts for hours in my eye/temple region, burning in the top of head that rarely goes away and then the stabbing pains off and on throughout the day. I just feel like everytime I think I am pin-pointing any sort of pattern everything changes. It makes it all very confusing and frustrating. I am determined to try and stick this out for the time being to give this new medication time to work before throwing anything else back into the mix but I am getting tired of feeling so crappy constantly:(
  4. I replied to an old thread yesterday after seeing a new neurologist on Monday. He thinks I have SUNA which is closely related with SUNCT...but there is very little I have been able to find regarding SUNA which is frustrating... Also, I do not have that many attacks per day but I do get several instances a day of short burst of burning or stabbing pain that are short in duration which I just thought were shadows... and I still have all this pressure in my temple and eye that is constant for hours at a time though. SUNA does not explain the 30min-1hr long attacks I have. Dr. has started me on lamictal(lamotrigine) as a preventative. I wasn't sure if anyone has previously been through this diagnosis before getting a CH diagnosis? I know these things take time... just very frustrating. I also wonder if it is possible to have both? I stopped the D3 and the Verapamil 1 1/2 weeks ago to see what would happen and the headaches are coming back. My attack the other night was about a 6/7 and lasted about 30 min.-the worst one I have had in a while....
  5. Replying on this old thread based on visit from new neurologist yesterday. He thinks I have SUNA which is closely related with SUNCT but like Moxie said I feel like I have one foot in and one foot in clusters and also agree with Maria I in saying I've had attacks where i've been screaming, rocking back and forth, crying, shaking etc. which appears to be what cluster sufferers endurw with nicer attacks,which can cause the tearing and a bit of a jolt but they can still be managed. I still have all this pressure in my temple and eye that is constant for hours at a time though. I do not have that many attacks per day and SUNA does not explain the 30min-1hr long attacks I have. Dr. is wanting to start me on lamictal(lamotrigine) as a preventative. There is very little I have been able to find regarding SUNA which is frustrating... I wasn't sure if anyone has previously been through this diagnosis before getting a CH diagnosis? I know these things take time... just very frustrating. I stopped the D3 and the Verapamil 1 1/2 weeks ago to see what would happen and the headaches are coming back. My attack the other night was about a 6/7 and lasted about 30 min.-the worst one I have had in a while....
  6. I usually am not ever nauseous...seemed to just be a one off that day...my blood pressure is always perfect. I will look into this though. I do get nauseous and the headache is different when I get migraines and I think that is what was going on Monday because I ended up in bed all evening.... no light and no movement but hurt so bad I couldn't sleep. Medicine didnt touch it just made me more dizzy and I couldn't eat.
  7. That is rediculous!! I feel your pain though... This is my first go round so I have no idea about my cycles...just that this one started in the beginning of June. The neuro was of no help so now I am racing again to find a headache specialist to help me. I only have sumitriptan tablets at this point and no oxygen. The fact that the doctor was so rude I think I would be looking for a new one. They just do not seem to understand... even after describing my pain to the neurologist he was not convinced that I have CH since I don't get my attacks in the middle of the night and that I am a woman pretty much...because it's so rare...but he couldn't tell me any diagnosis otherwise... after I waited like 2 months to see him! Thankfully for now it seems I have had some success with the D3 regimen although the verapamil seems to have messed that up (apparently I am supposed to take that and the calcium 8 hours apart..?) so he frequency has come back just not the intensity... still extremely frustrating and exhausting. Have you tried the regimen at all? I did not see that you had mentioned it above. Hope you are able to get everything you need before it kicks in full force.
  8. Ok. So basically then I will need to take multivitamin separate from everything else and do that when I go to bed since I am taking the verapamil in the am and afternoon. I will try this. Thanks.
  9. I have been taking the benadryl and also the verapamil (although if this is going to effective I think my dose is too low) but I have been getting more frequent attacks again:/ Last Friday I had 3 and the last one was the worst one I had in a while. Yesterday I was feeling kinda queezy....checked my bp and it was 113/61 so not abnormal although the 61 is lower than what mine usually is. I guess this is just an unhappy side effect though.... I didn't feel great all day and got a killer headache last night....CH seemed to break through and make it intermittenrtly more intense. I have already had two hits today. These are not ones I can't function through although it does make work more difficult. I saw my chiro and he is checking with collegues to find me a headache specialist since I got nowhere with the neurologist. Fingers crossed.
  10. He told me at first to take it 3 times a day then said no do 2. Take 1 after a week or two up it to 2 pills 2 times a day and have my reg dr keep eye on my blood pressure but no mention of ekg:/ the ch doctors on the list are both in Tulsa. Which is a couple hours away...
  11. Eesh.... Ya I have always had normal blood pressure but I do know that my moms side of the family has a history of heart disease.... so that is worrisome. I just didnt want to take the topamax he suggested.
  12. My doctor prescribed me only the 40mg tab and said I can increase my dosages....how often is it ok to do so? I don't know how many days it takes for your body to adjust to the dosages.
  13. I will incorporate the benadryl. I need to add it to my pill box so I remember to take it... last night and today I have had attacks although not nearly as severe as before-so he is still "jumping ugly" as you say Batch. I saw the pain management dr I have been going to today for another round or triggers in my neck area. Since I am going to be starting verapamil he is going to keep an eye on my blood pressure and I also asked him if he would check my D level since I don't have a pcp and the neuro did not mention it only had asked if I had any lab work thus far. Headed off to the pharmacy once again... sigh*
  14. He knew about clusters...although I don't know that he really knows about treating it....but he didn't even seem to want to discuss becuase I didn't fit in this box he had in his head. Which is why at this point I didn't absolutely push the injectable although I did mention it and he was going to give me a sample but then didn't. I told him about my hyperventalating and he acknowledged that ya it makes it worse but didn't mention O2. No I have normal blood pressure. I couldn't remember off the top of my head what dosages were effective but I knew what he gave me was low. They are 40 mg tablets...which at first he said take 3 a day then he came back and said 2... and then I could up it later and take 2 at a time. I guess I will have to have my reg dr. do the blood work to check my D level.
  15. feeling extremely frustrated at this point after seeing the neurologist.... since I don't seem textbook cluster or a man he just gave me a diagnosis of cephalgia and episodic migraine and that was after I pushed him to tell me. Well no shit I have headaches and have had migraines in the last...but that doesn't explain these headaches. He wanted to give me topamax.... but I suggested the verapamil. He agreed to try that but put me on an extremely low dosage. Still no injectables.... instead 100mg imitrex tabs and no O2. He wants to see me again in 2 months. He didn't have a copy of MRI results either which I thought my drs office had sent him. Since I started the d3 and seem to be responding I didn't pitch a fit because otherwise I would have. So I guess I will see how this goes and if I get worse again push him for it.
  16. I experienced something else last night... sorry if tmi but I hear so much that u should have intercourse when you have a headache and there have been studies shown that it can cause pain relief. Seems to always be the joke with people... however last night it actually caused one. My head started burning and I just became hysterical because I was so upset which made it worse
  17. I am finally getting in to see the neurologist tomorrow. I have been on the D3 regimen for a couple weeks now and seem to be having some success with it. I am not getting horrible attacks that last a long time everyday. But i am still getting constant reminders throughout the day all just mild (burning, pressure, sharp pains) and that usually at the most last 10 min but most just 1-2 min. Just very odd to me and I don't know if this is normal. Also... I have noticed I am getting sharp burning pains in my right side now as well and I don't know what to make of it since I have been a left sider. Not that the left side has stopped. I just feel confused and wondering if anyone else has experienced this?
  18. I do seem to be having some positive response since starting the loading schedule over a week ago. I had to order the mature multi but have been taking everything else. My last really bad atttack was last Wednesday night (lasted about an hour). I still have had the pressure, stabbing pains, and burning off and on throughout the day(most only last a couple minutes....except today I have had it since last night very dull) but my last 3 attacks have not been as high on the pain level and have only lasted 10 min. I'll take what I can get. It's better than getting them everyday...multiple times a day... less than a week to go before I finally get in to see the neurologist.
  19. Thanks... I was trying to read through old threads just seemed a little lost. I do not do drugs. I smoked once and got extremely sick. What he brought me is Pharma grade cannabidol 100mg. I just didn't know if it's used daily as a preventative or supposed to be used as a abortive...doses or anything like that. He means well and I am willing to try anything really that will help until I can see the neurologist this just makes me nervous.
  20. My husband brought some home today for me to try... has anyone used this before and if so had any success with it?
  21. I have started the regimen. I have not tried Benadryl but the melatonin does not help me sleep. Seems like I wake up more when I take it. It seems around here getting in to a neuro is always a lengthy process. It was for my mom as well recently. I have had an MRI done and it came back clean. I did mention the indonethacin to the dr but he didn't think it would help as I don't think he thinks it is a look like. I don't feel like it would have hurt to least try... I will keep that in mind on the energy shots. I just feel like it's hard to tell sometimes when mine are going to start. Sometimes I think ok here we go and then it never does. I just hate to use them if I don't need to if that makes sense. I am not an energy drink person in general and never have been. Honestly besides tea and occasionally coffee I rarely even drink pop anymore. We did the pred with nortriptyline and I wasn't sleeping like really at all which then seemed to make it worse. Verapamil was not been mentioned to me yet. Maybe that is something the neuro will try along with hopefully some injectable imitrex or oxygen. The pills don't cut it. Takes way to long to get in my system and by that time I have been on agony for like an hour:/
  22. I think maybe you misunderstood what I was trying to say... someone that had responded to one of my previous posts... and it may have been batch actually thought beginning of august the cycle should have ended for me except that it has not and I was not specifically referring to the just the hair hurts going away I meant this cycle. Still waiting on the right tools.....so I am just struggling. The energy shots haven't been working as an abortive and I don't have oxygen or anything yet. The imitrex pills he finally gave me don't work either. I don't see the nuerologist until the 19th and my dr again on the 14th.
  23. I definitely get the my hair hurts.... it hurts to wear it up or even brush it some days. I sure hope that it does go away. I feel so lost and am glad I have people to help with my questions since this is the first time I have dealt with this. I really thought that maybe it would have gone away by now but I know from reading that everyone's cycles are different. My problem is I have no idea and am just praying that this is the episodic kind
  24. I have a question... when my headaches first started I was getting the pressure and pain all on my left side and my eye would be on fire and that's how I knew I was about to get hit. I have noticed in the past week that the pain is starting more in the top of my head. Still pain and pressure on my left side but my eye has not been as affected just in the past week but really intense burning and stabbing in the top of my head. Is this common or has anyone else experienced this? Just kind of confusing for me... I still have yet to see the neurologist to get an actual diagnosis-but saw my reg dr this week and he gave me imitrex but in pill form and told me to take it with naproxen. I did not notice that it made a difference at all except make me feel sleepy and numb faced. The burning never went away...
  25. I don't typically get attacks when I sleep although last night I woke up several times hurting. I have not noticed a difference with melatonin helping me sleep at all:/ I don't know what the deal is. I started out with 10mg and still wake up multiple times every night... is that normal?
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