Headaches and intense pain

Hi everyone!

Just a quick background, I had an aneurysm in August 2014 and my crainiotomy to remove the AVM in January 2015. They waited to do surgery because of the swelling.

Fast forward to today. I still have horrible headaches everyday and sometimes so extreme it is a constant sharp pain from the surgical site (my left temporal lobe) I have seen a handful of neurologists/neurosurgeons and none of them have done anything to help me, especially the one who told me I’m being “superficial” and I just think I’m in pain. I feel like it is now getting worse each year and I’m given no help from anyone which is causing PTSD.

Has anyone felt these same things as far as pain? And have you had a doctor prescribe something that actually helps?

My neurosurgeon is in Cincinnati and I now live in Austin so I am now going to see a neurosurgeon here. This is after he looks over my records and sees if he can even help me. I’m kind of dreading having another angiogram if that is what is required, I have had 3 angiograms and an embolization 5 years ago and I remember the pain I felt during and after.

Is anyone having the same type of issues, cause right now I just feel hopeless. Its so hard sometimes to even go to work or just live life.

Anyways thank you to everyone for reading this baggage I am carrying. God bless!

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Wow, that ongoing pain must be really frustrating. I sure hope your upcoming visit helps. My AVM was left temporal as well, I had a bleed and fortunately successful gamma knife. In Canada we have pain clinic’s. The expertise there is as the name suggests, to help manage pain. It may be worthwhile exploring similar options. Have you tried any naturopathic options. One thing I have learned is that there is such a variety in things that help. Many it is medical intervention, but we see some cases of botox being successful, hyperbaric chamber, various vitamin supplements, and a big one is hydration and electrolyte balance. Often it is a combination of things, but as you know the journey is often not quickly taken. Really hoping for success in you next appointment, and while I don’t know about swelling at this point but that would certainly cause debilitating head aches. Take Care, John

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@TLo Hello TLO I didnt have a crainiotomy but I too suffer from constant head pain and I am so sorry you got one of the drs who are douche bag- one pain from Illinois said that in USA that in school they dont even have a day of training in pain…
Prior to my avm I had a massive rare stroke due to 5 blood clots in my brain and most people die. I went into a coma and it fried my thalamus. They never told me my thalamus died until years later nor that I had centralized pain syndrome- When I got my motion back I asked why do I still have pain and they said they are tiny nerves they cant see in the mris that were damaged.
Right away they referred me to the head of the headache pain clinic-I see the head of stroke. neuro radiology and pain clininc at Stanford.

I have literally tried everything in the pain dept and I can tell you what helps the best is ketamine and there is a ketamine clinic that I am actually thinking about flying out in Texas, Houston

This place charges $600 per day per treatment and this is what I pay for my deductible at Stanford and they do low dosage-plus they have stopped doing it since COVD and even before they dont do it monthly like they are supposed to.-
https://newexodushealth.com/ There is also another place in Houston people recommend but I am not sure prices -https://www.lonestarinfusion.com/

It does look like there are a few places in Austin who do Ketamine for pain https://askp.org/directory/

Here is also a great book on Amazon about doing the infusions and how to prepare

  • You need to only watch happy stuff on tv and be in a good state of mind. When I had my inpatient Stanford had a bunch of sad movies and thank goodness my husband was to spend most of the time in the hospital with me.

I guess with Higher doses you can see stuff but I have never hallucinated. I usually bring a big camelback filled with electrolytes and they give you fluids and zofran if you feel sick.

With my inpatient infusion I got 3 months of pain relief. Stanford only goes up to 43 mg and so far I have only been up to 35mg we were just about to go up to 43 and COVD happened and they stopped. I also have a script for oral Ketamine for the bad days.
Hugs Angela

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Hey TLo,
" Has anyone felt these same things as far as pain?" Yes
"And have you had a doctor prescribe something that actually helps? and No.

I’ve required a few neurosurgeries and since my last operation the headaches have been off the scale. In the surgeon’s view they ‘fixed’ the issue but if this is fixed, then I’m another ‘F’ word. I saw all sorts of dr’s/specialists and professors. I tried all sorts of treatments, all sorts of medications. If someone suggested a treatment, I gave it a go. But no one had my ‘key’.

I had dr’s tell me that 6months post op everything had healed. They made out it was all a psychological thing. The brain itself has no pain receptors, seemingly, so I wasn’t feeling brain pain (My head was telling me otherwise) but rather nerve pain. They dosed me up on meds for nerve pain, which really messed me up. I tried Botox injections to relax the muscles in my neck, which gave me a sexy, wrinkle free neck, I just had to walk everywhere backwards to show it off :smile:, but did nothing for the headaches.

Through this journey (and it has been one hell of a journey) I have had dr’s and medicos tell me everything from I just have a low tolerance to pain, that I’m a drug seeker, that I’m a hypochondriac, that I ‘like’ being in pain, that it’s all in my head (as if I didn’t know that already) or my favourite ‘You just have to learn to stop thinking about it…’. I explain to them that I have this man in my head with a GREAT BIG hammer, trying to bash his way out and all I have to do is stop thinking about it. YEA RIGHT!!! If only it was that simple.

Then at my last neurosurgical appointment I had this new young female dr tell me "We don’t know everything about the brain. We don’t know why 2 people can have the same issue, require the same surgery and yet have vastly differing outcomes…’ For many, many years I’ve had all these medicos tell me “We know it all… …we know everything about the brain…” But NOW, I had this dr admit, they don’t know it ALL. I looked at my wife in absolute disbelief. Finally, FINALLY!!! they admit they don’t know EVERYTHING and this is real.

I’m in Australia and over the last few years opiates have been labelled ‘the new evil’, so our government, in their wisdom, have heavily restricted all opiates. Even for low(er) dose opiates there’s a whole new review system been put in place, where you have to see another specialist to confirm that an opiate is an appropriate option for pain management. And as for ketamine?, ohh, I’d have to be on my death bed to get access to ketamine.

For me, my headaches vary MASSIVELY, from type to location to intensity and due to this I have a variety of ‘management tools’ including drugs like opiates, medicinal cannabis, benzos etc. I use relaxation techniques, hydrotherapy etc and I ‘try’ to mix’n’match to obtain the benefit I need. I say ‘try’ because I’m not always successful and at which time I need a darkened, silent room and a bed.

I can assure you, you are not the only one trying to manage all of this and nor are you the only one getting minimal answers from the medicos, in fact, it’s more common than they’ll ever admit to. We know this because we live it too, so come talk to us.

Merl from the Modsupport Team

Thank you for your reply JD12!

I am seeing a pain management doctor now since the last 4 neuro doctors were a no go. I am back on Lyrica and the next and last step is botox to see if it works, so I am praying it does, cause after that there aren’t many more options really for him to do and I’ll have to go somewhere else and stay all over.

Hi Angela4!

I pray for your journey and all that you have been through. I was looking up ketamine after I read this. I see we have a few locations here in Austin. I see my pain doctor in a week, I am going to bring this up. Thank you for opening up a new door for me to research. What was your first ketamine experience like? I hope you are able to continue getting a process that works well!

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Hi Merl!

I haven’t really heard from someone who has had such a lengthy no success experience with doctors as me! I just can’t find anyone to take my pain seriously. I have always said doctors need to come up with a device they put on and get a simulation of what we truly feel like. Sadly enough its so rare to find a neuro doctor who has even had any brain complications.

The botox is really my only other option right now with this doctor so I guess I will try it and if it doesn’t do anything I’ll have to start again at ground zero and find someone else to give my baggage to.

@TLo Hello TLo I was able for my 1st Ketamine infusion to get inpatient 5 day infusion which means in hospital 24/7 for 5 days - This is in your start and then you are supposed to have monthly 3 day out patient follow ups.

Its supposed to reset our pain to either super low or gone. The first time I had complete head pain relief for 3 months and a few weeks of leg pain relief-

I did not get a monthly follow up for another 6 months sadly. Many of us in the Stanford Pain clinic were getting the infusions before covid and now some are going to another place since Stanford wont do them during covd-

Even when they do them outpatient the 3 day outpatient isnt for 3 days in row cause the nurse has a day off - so I am really rethinking about going some place else.

Another person I know who also has Ehlers Danlos is being referred to a different place so I am awaiting to hear back from her to see how it goes.I also dont know if my pain dr will continue giving me oral ketamine.

If you do get your doctor to refer you and write you script Belmar pharmacy in Colorado is the cheapest and they are able to make pill forms - I hear the trouche form tears up the mouth for some reason.

If you are on Facebook there is a good Ketamine Support group - (https://www.facebook.com/groups/781893918621316/) Be sure to check the files

Its a super old drug and anesthesiologist often use it. One guy on my CPS support has had 3 years of pain relief.

We should not have to suffer. I have seen Medicare pay for it. Some insurances will only pay for outpatient and some will pay for it for migraines which is funny cause it can cause a migraine. In my case my stroke dr did not want me to have it cause I am so allergic to medications and I literally said I want to punch you in your privates- I said I have tried everything even some medieval shot up my nose and nothing has taken away the pain. I even tried 3 allergy drs to get tested and one was a Stanford who refused to speak to my Stanford Pain dr…so my Stroke dr who is the head of stroke changed the order from out patient to inpatient without telling me - then I got a letter. I did not think our insurance would authorize so I called ahead and asked and got an email and a vm with the approval code…but after I was in the hospital my insurance statement said denied …so I went back to Stanford and said you guys said It was approved and when I doubled checked with the insurance they said they were never contacted! so Stanford had to eat it. It was 69K -

That was 2 years ago and now its 130K! They have new hospital and I guess have raised their prices! I cant believe it esp considering the low dosage you get.

Please let us know if you are able to get it in Austin and how it goes
Hugs Angela