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Hi there,

New member here, long time suffer of the "Beast".

I'm currently going through an attack period and I've not long had an attack as I write this. For a first post, this is probably going to come across as negative and angry but that's how I feel at the minute.

I was officially diagnosed just over a year ago by a Neurologist with seasonal cluster headaches and was prescribed Maxalt Melts (10mg) and Verapamil as a preventer.
The Maxalt Melts are hit and miss and seem to upset the beast more than abort it and throws these otherwise clockwork headaches into utter chaos. And as for the Verapamil, well they just seem to p*** the beast off as well and I'm none to happy about taking them due to the risks they carry.

Last year, I had a particularly bad episode which lasted around 6 weeks with up to 8 of the worst attacks per day I've ever known.

During that time, I had an extermely hard time even obtaining the Maxalt from my GP who were ummming and ahhhing about issuing prescriptions. All they give me is a pack of 6 which lasts me three days and they're surprised I come back for more!!!! I am practically having to beg to get my medication. I tried to get hold of the neurologist but he wasn't available and I tried to bring a routine appointment forward so I could at least see someone about it but I got nowhere there. In the end, I had to put in a complaint with the NHS just to get my meds.

When the routine appointment finally arrived with the neurologists I told him about the problems I'd gone through during the worst period of attacks in my life and he wrote a letter to my GP asking them not to withhold my medicine when I needed it. The nerologist also told me he would leave an open appointment for me should I need it.

Fast forward to now and here I am again, fighting with my GP surgery to get my Maxalt once again. They keep issuing packs of 6 and I'm on the max dose of two per day so they're only lasting me three days. I've had periods where I've gone without just because they are not wanting to issue back to back prescriptions because as soon as I've ordered one lot, I'm ordering more the same day so I don't have to go without over the weekend. It's pathetic and I'm sooo angry!

Having issued me with 4 boxes of 6 already, they were refusing to issue me any more without a doctors review which they had scheduled for weeks away.
The last time I ordered the Maxalt, I received a text saying they weren't prepared to issue any more without seeing the doctor / pharamcist. This forced me to leave the house and pay the doctors a visit to complain most bitterly. To which they finally issued me a box of 24 maxalt until the review appointment.

I reminded them about the letter from the neurologist and all the problems I had last year with this and they said I still had to have this poxy review. I told them they can book their review but I'd probably be on the floor trying to rip my own brain out of my head when it came down to it. They didn't seem interested or sympathetic.

What, do they think it's magically going to go away? Do they think I can tell them how long it's going to last or when it's going to start?

All it sounds to me is it boils down to penny pinching. Does he really need this much medication... It was prescribed by a Nerologist and they have written instructions not to interfere so why are they?

A while back I asked about Oxygen which they were evasive over and I got the impression it was too much cost/ trouble.

I feel like I might as well not bother with the NHS. I don't need this stress when I've got the beast to deal with.

And what of this so-called open appointment with the nerologist - well aparently it's only open for 6 months so I need referring back to the nerology department again by my GP. Where's the point.

 

So I've decided they can shove their meds where the sun doesn't shine. I barely bother with doctors and hospitals as it is and when I really need their help they let me down so they can get stuffed. They've got no time for me so I've got no time for them. I sharn't bother them again.

I've taken it upon myself to order some psilocybin from abroad and to hell with the law. I can't stand this any more.

Rest assured, I will be in a better mindset and free from triptans before I consume said fungus but this beast is getting nuked.

 

Sorry for the rant but for all intent and purpose, I'm alone in this just like I was before the diagnosis.

 

 

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Well I hope you feel better after getting that off your mind. We have all felt like this and gone through the same type thing in the past.

 I would say read up on Batches vitamin D3 regime, this helped me cut the pain level way down and also cut a few attacks out per day. I am chronic so I never really get a full pain free day. you can also read up on how to get welders oxygen setup and start aborting with the o2 to help get you off triptans and other busting blocking meds. 

I would recommend reading everything you can  on this site and dont be afraid to ask questions 9 times out of 10 someone else has dealt with what you are going through. 

welcome aboard, you are in good hands here. 

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