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Elrik138's Achievements


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  1. This is pretty constant no real break. I was unable to take verapamil as it tanked my BP so bad I was falling. O2 kinda helps but not really so, on my budget for the little, it does do it really isn't worth it. Sumatriptan injections were my best friend but are becoming less effective, Topomax is now up to 150mg twice a day than throw in the TN medications. 3,600MG daily of gabapentin, Carbamazepine being moved down, so now down to 300mg twice a day to make room for the "New Med" Dilantin just starting so only at 200mg a day, but that will only go higher. As it is ATypical, ALL surgical options for my TN have been removed. But as a plus, I do get as much Zofran as I need. I am really sorry to vent but right this minute my head/face hurts so very bad and nothing seems to help. I have very few headache-free days and I can't always abort them, plus ATypical just means it will always hurt and there is nothing other than medication that can be done Neurosurgeons won't touch you with that label. I can actually get psychedelics but my Wife really doesn't want me to do that as I may have done more than my fair share growing up. I heard that melatonin might help?
  2. I will hit 1 year of this month on, October 28th. I had read constantly that Clusters can last up to a year, but recently on another forum, someone said that they were sorry to tell me that they can last yearS! Three months ago I was put on Emgality 300mg, a month and I am getting ready for round two of sphenopalatine ganglion blocks and ketamine infusions. Worth mentioning that I also have Trigeminal Neuralgia on the same side of my head so I don't know Cluster-Tic maybe? I had Gamma Knife for that in December of 2018, the Neurosurgeon had said that it might help the Clusters, it didn't. Also, my Trigeminal Neuralgia is now ATypical, or Type-2, whichever you prefer I don't know if that is pertinent or not thought that I would mention it as they both share the same nerve root. So the question is will this end soon OR can it last years? I received the Cluster diagnosis by two different Neurologists.
  3. It is the left side of my head. It really affects my eye and forehead, plus it makes my trigeminal neuralgia also on the left way worse, in my jaw. I already did o2 10L for 15 minutes followed by injectible sumitriptan then a nap. Woke up it hurts so bad all I can think about is the er but I have been there four times since October and before getting my new neurologist. I sit here typing with my left eye closed, this hurts so bad I don't know what to do.
  4. I went to the neurologist. He agreed that in my case Verapamil won't work because of my particular blood pressure issues. He gave me a script for Indomethacin, upped my Topomax, and wrote for the Non-Rebreather mask. He said that I have CH and TN sending me for gamma knife to fix the TN. I really don't know why the med supply told me what they did that is why when I quoted them I put a question mark at the end. I think I can get credits on my taxes buying from the med supply vs Amazon not sure though. The price will depend on which way I go.
  5. I was on 40mg 3 times a day
  6. I can't take the Verapamil. It was tanking my BP way too low, double vision (side by side) and woke up twice to what I had described to the doctor as convulsions. What I now believe that those were the tail ends of seizures from having my BP way too low. Also I couldn't stand to ride as a passenger in a car double vision and motion sickness. That all went away when I quit the Verapamil. My Wife used to be a CNA way back when, but she had trouble measuring my pulse one night. The Nortriptyline wasn't for headaches at all, but for my facial pain. Trust me when I say there are times when I seriously don't know what is worse to have this headache or to have facial pain. When that flares I cannot even lay my head down on my pillow as it will cause the facial pain to spike so severely in pain. So I just stay up all night again. I just had to refill my o2, an E tank. When I asked about the rebreather mask they flipped out saying that they would not give that mask to me unless the prescription said so, as they don't want to be responsible for killing me from a build up in the mask? Does any of that make sense?
  7. The first time in October that I went to the ER, the doctor there suspected a cluster headache. I don't know everything that he gave me other than Zofran, Benadryl, and three other drugs in an IV solution, with high pressure o2. It was gone right until the nurse added a steroid, is what she said, then released me. That steroid brought it back a little. I was able to stay out of the hospital for about a month. When it got bad enough to return my face, eye and head were in pain. This time the doctor that I was assigned to decided that it was optic neuritis and gave me 500mg IV Solumedrol and admitted me. The next day a neurologist came in said that it was a cluster headache and did some med changes but gave me high pressure o2 and it killed it enough for me to go home. Now it is hitting me again but more temporal and my left eye is really affected. I get side by side vision. I just went to my ophthalmologist who looked at my eyes called it all good and told me that it was probably the cluster headache. It is now tha6t I am questioning the med change done by the neurologist. Stopping Nortriptyline (for facial pain), and instead having Verapamil which is some sort of blood pressure med. Maybe that is why I am having more facial pain and new types of visual disturbances? I guess I will find out next Tuesday when I am seen in office.
  8. I am really trying to make sense of all this. I am having a hard time thinking at this point. Before at most the longest my headaches would go is a month or just over that. With this one, I am starting on my 3rd month. And it seems like thought and reason are going out the window. I have gone through the ER 4 times and to an Ophthalmologist once as well. I guess now I am closer to the new Neurologist who was the one to diagnose this correctly, the 18th is closer now. I just can no longer think right. So please bear that in mind when explaining things to me.
  9. Would something else say flaxseed oil work in the place of fish oil (I am a vegetarian). Also this from the page you linked to "The standards of care recommended treatments address the neurological symptoms of CH as a trigeminal autonomic cephalalgia (TAC) with neurogenic origins in the hypothalamus and manifestations in the trigeminal nerves." Could this affect say Trigeminal Neuralgia in the jaw? As this is the worse that it has been for that as well. As far as the oxygen mask from what I have seen here looking at the files what they gave me is wrong. It is a basic mask, no re-breather. Looks just like what is pictured below.
  10. I have been Vitamin D deficient´╗┐ for years. I am currently on 5,000 units of D3 a day. That seems to keep my D about normal. I ended up in the hospital being admitted for 3 days as they initially thought Optic Neuritis and I was given an IV dose of 500mg Solumedrol. But a Neurologist and his PA came into my room and changed the diagnosis back to cluster headaches. He also re-read my old brain MRI and said that he did not think that I had MS but that the lesions were made by migraines. I was given high doses of O2 and nasal Sumatriptan. For other reasons the nasal spray was a bad idea, tried to warn them about nasal sprays, but oh well. I ended up back in the ER two more times since then, both times they told me that it is also me Trigeminal Neuralgia acting up. I was told by all three visits that I should drop my current Neurologist in favor of the one who saw me in the hospital. So I have made an appointment with the hospital Neurologist. Even with just seeing him in the hospital and having a pending appointment he has already prescribed O2 and injectible Sumatriptan. My insurance would not pay for the tank wanting me to do some sort of trials is what the med supply said. But they are letting me rent the tank with my rental fee going towards purchase if I want it. Looking at the mask in your files they gave me the wrong type just a standard mask, and the regulator goes up to 10 then jumps to 15 and stops. But I think that my cluster headaches are/were seasonal usually starting around October going for 1-2 months but I am now on my 3rd month and the O2 and the Sumatriptan injections are giving me a little relief, but not taking them away.
  11. I have had chronic migraines since I was 8 I am now 48. Over the last 10 years, they have started hurting my face and started lasting 10-30 days. Yes, there are multiple diagnoses going on. February 26th, 2016 I was diagnosed with MS. In January 2018 Optic Neuritis. Somewhere in there the decided I have all over body Neuritis hence the gabapentin. Within the last 6 months Trigeminal Neuritis was diagnosed, and on October 27th, 2018 Cluster Headaches. The carbamazepine is for facial pain supposed to work with both TN and CH as CH hit the Trigeminal nerve. The nortriptyline is being added to the gabapentin as I take the FDA maximum allowed dose and it is becoming not enough. The Imitrex is pill form. Morning and night I take Topamax to try and stop migraines from occurring. And Imitrex once I have one. Toradol usually knocks out a migraine that is Imitrex resistant. So this is not a long lasting migraine and it lasts way too long for TN. But 100% oxygen, Benadryl, plus whatever the other two drugs were knocked it right out. I did not come up with a Cluster Headache the Dr. at the ER did. He treated it as one and was successful until adding the steroid right before I was released. For an hour I was good.
  12. This time it started on October 17th, 2018. I went to the ER on the 27th. I was told that these are cluster headaches by the doctor working at the time. In 2016 I was diagnosed with Trigeminal Neuralgia, then in December 2017 Optic Neuritis in the Left Eye. Blindness lasted 3 days peripheral vision still has not returned. I have had chronic migraines since I was 8 years old. Always through my left eye. This "Cluster Headache" is on the left upper side of my head encompassing my left eye. From my temple to the bridge of my nose than straight up through my hairline than back down the side to my temple. My eye and temple have it the worst. Always my @#$%# left eye. Anyway, at the ER they were able to kill it with 100% oxygen and a three-drug mixture all I remember is that Benadryl was one of the three. I slept for about an hour the nurse woke me up put a steroid in my IV which almost immediately brought back the headache. But they released me anyway. I already have neuralgia which I am maxed out on gabapentin for, so my doctor not knowing what else to do has just added nortriptyline. I am also on carbamazepine for the TN I called my Neurologist and he upped that. I have had this sort of thing happen several times before lasting up to 30 days. I usually take a lot of Imitrex for it hoping it will help but it does not. Nor does the shots of Toradol from the Dr. It gives me an hour or two pain-free in the morning BUT, only if I am able to sleep. Then it kicks in, in its full glory. My face really hurts bad right now and I don't know what to do. The beginning of next week I see both my family Dr. and my Neurologist, as that was the soonest I could be seen. I can't live with this I don't know if I can make it till next week.
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