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atama

Slow response at doctors

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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! 

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*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! 

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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.

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A terrible story indeed.  I have heard that OUCH-UK can be helpful, particularly since the battle sometimes doesn't seem to end with getting the O2 prescription -- you might still have a struggle with the O2 provider.  Good suggestion from greeneyes to look into the D3 regimen.  You can read about that in the ClusterBuster Files section.  There's also a post there about dividing Imigran injections so you get two or three from one injector (I think it's on the second page of that section; the title is "Extending Imitrex").

I'd guess the new preventive is probably Topamax.  I don't think you say how high your verapamil dosage was, but many people need to get up to 960mg/day for it to be effective.  

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YES!!! I have had this problem WAYYYY too many times to count...I got so upset about their bullshit "paperwork first" method of care that I leased my tank ($120/yr and I KEEP IT ALL THE TIME, even out of cycle...it costs me $120/yr to keep it in my basement (where it's been unattended for almost 4 years) :) 
Lo-and behold! They hit again and I have 02...totally worth the $500 to me...the beast can kiss my butt. :P I do that to avoid the nonsense you are going thru...however, my O2 supplier has sold the business and now the shit-show starts again with these people and their useless (to me) knowledge base and rafts of scripts and paperwork. It's nice that I still have some O2 in the monster M tank so I have time to deal with these clueless people who don't have a shmick of an idea what I (We) go through. I have no patience for the medical mafia anymore. They're as much use to me as a hat for a headless horseman. I've discovered in my 25 yrs that I must NEVER wait for onset and once I get something in place, NEVER let it lapse. ;)
I feel your pain, on several levels unfortunately. It's what we have to do as CH'ers...we can't count on the people that only do the work for the money, they are no use to us. Always be aware of those ones. Never take your car to be fixed by someone that doesn't even know how to change the oil...if you get my drift...lol.
PF wishes for you friends! 
Nanu nanu! <3
Mike from ORK out!

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Hey Atama,

CHfather was spot on suggesting you contact the staff at OUCH-uk.  Their Hot Line number is 01646 651 979You can also go to their website at: https://ouchuk.org/

Ask them to email you a copy of the NHS Home Oxygen Order Form (HOOF), fill out your part and have your PCP or neurologist sign,  Keep a copy...  This bbn is not accepting attachments for some reason so I can't attach the HOOF at this time.  However, if you'll shoot me a PM with your email address, I'll send you a copy.

Check your PM InBox.  I've sent you some additional info to discuss with your PCP.

Take care,

V/R, Batch

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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! 

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Hey Atama,

Your home oxygen therapy prescription should read "Oxygen therapy at 15 to 25 liters/minute with non-rebreather mask for cluster headache."  Please let us know when you get the HOOF kit.  There's a new oxygen therapy procedure that works very well and rapidly to abort your CH.  You'll need it until you get started on the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and the cofactors.

Take care,

V/R, Batch

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