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About greeneyes87

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  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 awf
  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
  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 t
  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 wom
  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
  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
  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 ta
  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 result
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