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ClusterBusters

atama

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  1. atama

    Slow response at doctors

    Hi everyone! Thanks for your responses. I had to chance up my Oxygen at the doctors. Turns out the doctor I spoke to didn’t put the order through at all and just went on holiday! The GP available had said she has no idea what dosage etc and I have to “find out” surely it’s her job to figure it out! The info from OUCH will be really valuable! I must get that as I have an appointment on Monday! I’m also going to look into the vitamin option. Thanks guys!
  2. atama

    Slow response at doctors

    *update* Doctor called and was rude from the off! Reluctant to prescribe the Neuro recommendation of oxygen (it’s more expensive) and had to literally argue with her to prescribe preventative and oxygen. She wanted me to just see how I get on with preventative (can’t remember name of it) could take a month so get the right dose! Got what I wanted in the end but she was super rude about it!
  3. atama

    Slow response at doctors

    Hi All Is anyone (UK) suffering unnecessarily due to difficulties with speed of service. Last cycle was April time. Usual Verapamil treatment failed to work so I survived on Sumitriptan. Managed to get phone appointment with doctor and eventually face to face appointment once additional doses of Verapamil failed to improve headaches. Doctor booked a Neuro appointment but cycle finished before this appointment (August) Saw neuro in August who sorted new treatment plan including oxygen - but couldn’t do anything about it until next cycle began. Shadows started yesterday so I was straight on it. Called doctors at 9 but earliest appointment I could get out of work hours was in 3 and a half weeks. (My cycle will be in full swing by then) Telephone appointment in 2 weeks but can’t answer the phone at work due to my job. (They can’t give a specific time) Was told I couldn’t get Neuro recommended prescription until I’d consulted with doctor. Took day off today to call the appointment line at 8:30 to try to get an appointment for today over the phone. Had to call 101 times from dead on 8:30 before being connected. Had to pester for a telephone appointment today because apparently an ongoing issue doesn’t count as an emergency (even though I was told yesterday I could phone and get an appointment the same day) had to argue my case for a phone call because I said I’d been seen by the Neuro and was asked why I didn’t get what I needed in August and had to explain the cycles and the fact that it took 4 months to get a Neuro appointment by which time I was out of cycle. Then had to explain what life would be like every day that I don’t have that medication. Shes going to pass the info to the doctor so fingers crossed I get a call today. Has anyone had the same experience of never being able to get to the bottom of anything before the cycle is finished if it’s own accord and then feeling like you’re starting again from scratch each time the cycle starts again. It’s a race against time! I’ve got 2 Sumitriptan injections left from last time so if the headaches kick in fully before I can get the medication I need I’m in for a terrible ride. (Once you put prescription in it usually takes 3 working days for Sumitriptan at least as they have to order it-that will take me to Monday even if I’m sorted today) On another note, I tried to bust yesterday (has worked before) but dried mushrooms I had stocked up since May didn’t work-not sure if I under dosed or if they lost potency due to storage. Didn’t get any effect at all (usually have some mild side effects) I could try again at the weekend and increase the dose (to avoid shutting the door) I don’t have any meds’ in my system -I issued coffee successfully for shadows. Just depends if the real Clusters kick in before the weekend ☹️ Many advise, guidance or sympathy appreciated!
  4. atama

    So glad to find this community

    Hi - I'm a newbie too. Going through the same 'experiments' with medication. :-/ I hope verapramil works! 8-)
  5. atama

    New User Questions

    I always assumed that eye watering was just pain related, my eyes are pretty sensitive anyway to wind, sun etc and water easily. I haven't really had eye drooping as much this year...but usually I can barely open my left eye at all. When I had an attack during lunchtime at work the other day I sat and described every moment of the headache to my colleague and good friend who kept saying "you need to go get an MRI - seriously!" I did find it useful to sit and describe it to someone as it was happening and perhaps that's what helped me describe it to the GP. bejeeber: I have watched/read the links you sent! Thanks! All really useful and interesting information 8-)
  6. atama

    New User Questions

    Hi Bejeeber Thank you so much for all of your advice and links for me to look at! I am not sure how to do lots of quotes like you have so I hope this reply makes sense. The eye watering and nose blockage does seem to be a major symptom but i didn't really describe it well enough. I probably didn't even mention the eye watering to the doctor - i just assumed that my eye watered because it hurt a lot! :'( I told them many times that it felt like I needed to blow out and clear my nose for the pain to stop and felt pressure in my sinuses. I think the GP who finally figured it out might have asked me about eye watering for me to finally mention it. The GP checked a reference book when prescribing the Verapamil to see what dose to start on...so I am wondering how much he knows about it... I like the idea of vitamin D and I have read about that on the other forum. MoxieGirl has helped a lot via PM and also gave me some info about alternatives which i think is what you mean by busting. All of the terms are new to me : I am now going to spend some time looking over those links! i might see if i can get my follow up moved forward slightly and push for the referral. I will certainly look into finding a headache specialist.... being a test subject for medication is expensive :-/ I do love my doc for hitting the nail on the head (no pun intended) It's a new doctor's as i moved house last year although it's the second doctor I saw at that clinic. I spoke on the phone first (something they do to stop you actually coming in to the clinic) and he told me to come in and spent some time listening. He probably did some research between the call and the appointment and asked the right questions. Very grateful!
  7. atama

    Weather condition and CH

    Thanks for sharing this story, it is interesting. Wonder why you got hit so hard in Japan. I didn't...I was less hit. :-/ Not sure though because as I said, the seasons are even more extreme there. i have noticed heat, especially stuffy heat is a trigger but over there it gets very hot in the summer (like you need to take a shower after walking around the corner to the shops) but still headaches were not as bad. The only thing I can think of is that it's very humid there. Dry heat i think is worse for me.
  8. atama

    New User Questions

    Thanks! Yes i agree. My GP had a kind of frowny face on like he was thinking really hard. But the important thing was that he was open to getting to the bottom of it. When I read the info he gave me - everything I had been saying was on there. i tried to think of every possible symptom that might have anything to do with it and that seemed to get the right diagnosis. I have been doing some research since this post this morning and based on what i've read I think my dose of Verapramil is quite low, it takes about 10 days to kick in...and before I get my nasal sprays/oxygen I can try Red Bull 8-) although i have to be careful as i shouldn't drink too much with Verapramil. I will let you all know how I get on.
  9. atama

    New User Questions

    Thanks - I registered a few days ago. I am just waiting for my registration to go through before i can post on forums.
  10. atama

    Weather condition and CH

    I lived in Japan for 3 years. They have 4 distinct seasons there. In the winter it's similar to in the UK (where i am) sprint is slightly warmer, summer is VERY hot and humid, and autumn is probably a little bit warmer than the UK. They also get rainy season and it hammers it down! Despite this, my headaches were not as bad there. Although I did get them - I don't remember being in severe pain or it causing a problem with my day to day life. This is not quite what you asked...but I thought it was relevant.
  11. atama

    New User Questions

    Hi everyone! I have suffered from cluster headaches for a few years now, but only recently diagnosed after the frequency of attacks per day went from 1 to around 3. I used to get these headaches at the exact same time each day, and typically they would last from May/June until late summer. Last year the cluster period lasted into Oct! :'( I was at the doctors a few weeks ago and as usual, due to the blocked nose and teary eye symptom, was being fobbed off with this being an allergy...probably pollen. After another week of agony I went back and saw a different doctor who, although no expert on CH, listened carefully to my problem and made the right diagnosis. he printed out some info and i knew straight away that this was the problem i've been having. Although it's a relief to finally be heading in the right direction - it is quite scary! I have been reading about people who suffer 8+ headaches per day and also chronic sufferers and am worried I will get to that stage. If you are reading this, and you are one of those people, my heart goes out to you! I have ben given Verapamil 80mg twice per day and Zomig Zolmitriptan nasal spray, i specifically asked for the spray initially because I am a teacher and if I suffer an attack during a lesson it's easier to be able to take a nasal spray that an injection. I have been taking Verapamil for just 4 days - how long does it typically take to work - if it is going to work at all? Also, UK patients: how many nasal sprays/injections do you get from each prescription? I get 6 and have found this to be a problem. I was given the medication on Wednesday, and by friday when the doctor's closes I had used 3. I found that if I caught the headache in time it would do the trick and I managed the rest of the day/night (slept very well after taking them late) However, on Friday night I suffered an attack and took one, on Saturday morning the same and on Saturday night as well. Now I have none left! If I suffer an attack today I will have to endure it...not good but it's Sunday and I am home alone so I will just have to ride it out. However, tomorrow I am at work and won't be able to pick up a prescription until the afternoon (after work) It's risky! I have taken an odd day of last week and the week before (one was when the headaches started and left work early and was off the next day and the other was after running out of Triptan tablets which the other doctor prescribed first) I can't keep taking time off every time I run out of nasal spray! What should i do? I am booked in for a follow up in the 2nd week of June, where I will be referred to a neurologist if things aren't looking up. perhaps oxygen is the way forward, then I can use nasal sprays at work and oxygen at home. My headaches are not as predictable as they have been in the past - often they come at night (if i wake up with one it's too late for the nasal spray to work well) but sometimes they come in the morning, or during the day. I understand how long this post is! but anyone who can share their experience about anything i have talked about I'd be happy to read it. Thanks for taking the time to read this 8-)
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