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Now are there 3 and 4 or 4 and 5?

Finally got a referral to the UW (University of Washington) Headache Clinic and was SO blessed that after five weeks of processing the referral, I got in relatively quickly. The first opening was in November, BUT if I was okay seeing a Resident and then the doctor (so the Resident would do all the intake) I could get in the next week. Yahoo! It was like I'd won a date with George Clooney! (Husband says no, I cannot date GC because he is responsible for my SAH as I had it when we went to see one of his movies. I say it was the reservoir-sized diet soda that I was holding.)

Anyhow...This is the third and fourth neurologists, if you don't count the neurosurgeon (my original, "It'll be fine in 4-6 weeks, you can go back to work Monday" doctor).

I actually truly felt listened to. I mean like the first time, really truly listened to. It did not feel like they decided as soon as I walked in just what was wrong and how they would cure it. They truly listened.

I first had an extensive written questionnaire that asked questions I'd never been asked before like what makes the pain worse/better, what is the quality of pain, what type of pain, etc. Then a long interview that lasted quite a long time, again with questions that I felt should always have been pertinent like "Does the pain get better or worse throughout the day on a bad day?"

The main neuro went over how pain neurons work and told me that she felt that even after 18 months my brain is still healing (even though another neuro told me that the scans show it had healed) and that the pain neurons were firing on all pistons. That can happen sometimes after a brain injury. Apparently if you have a family history of migraines (I do not) your brain can "turn them on" after a brain injury as well but since I hadn't responded to any migraine treatments, nor had the family history, that was ruled out. They encouraged me to buy a book called "Stahl's Illustrated Reference for Pain and Fibromylagia" which is a medical textbook, so I don't have enough knowledge to understand all of it. However, we went over some of the illustrations and she showed me the mechanisms that are at play with the medication I was currently on (Amitryptline) and told me she would never have put a woman on that high of a dose because of the weight gain. I gained 9 pounds the first week I was on it and have had to restrict calories to keep that full gain at 11 pounds.*

Then she showed the next medication she was going to put me on, Gabapentin and discussed how that worked, and eventually she wants to try Cymbalta, but the nerves need to settle down first.

So she reduced the Ami to 25mg per night, added 300 mg Gaba, a B vitamin complex (has already helped with my dizziness upon standing), and a supplement called SAMe. So far no love. I had bad bad BAD headaches the first four days after, I suspect partially the change in weather, and partially the change in meds. But then I had four good days of light headaches and periods of no pain. I knew the first test would be this last week when thunderstorms were headed our way. They came early and unfortunately brought headaches (close to going to the ER pain) with them.

So I am hopeful. I didn't expect anything to work immediately. She did say that no, they would not be forever. She was also surprised that my original doctor even put any kind of a time on the headaches, because she says that we simply don't know because each person is different. (She had told me they would last only 6-8 weeks.) She also poked holes in the concern that after one year I was about as good as I'm going to get.

Plus she, well they LISTENED! They heard me when I said who I was, and encouraged me to keep running and add strength training (I already do). They also encouraged daily sun, outside, soak it in during the morning hours and a SAD light for Winter because that can help the body with natural pain killers. They also did NOT act like there was one road that we are all getting on and even if it is evident that it's not necessarily going to get us to our goal, we are not getting OFF by-God! That's how I felt being treated with migraine medications because I don't have migraines.

I will admit to being down today. It has been over 18 months and I truly feel that nothing in the headache arena has changed in the last year. School is back in session in less than a month and I am still dealing with 1-2 really bad days a week; days that will keep me in bed some weeks. I foresee another school year of trying to make it through the end of the day, and not being the teacher I used to be. That is very important to me. I will now be two years (school years) out so none of the kids will have been here when I had my SAH so won't understand the issues I have. I will have to educate them about it, without sounding like a whiner. I'll have to do it carefully as I get to know them because if I happen to have anyone who decides he doesn't like me, that can provide ammunition for causing problems. (This is not something that has happened to me very often in my 18 years of teaching, where a kid has disliked me for some reason and has tried to really intentionally hurt me emotionally or physically, but it does happen. That's why we have to be so careful about what we disclose. I had a colleague with serious chemical sensitivities and all the parents knew, all the kids knew, so one day three boys decided they were mad at her and literally doused themselves in cologne, which sent her the hospital. The parents, rather than discipline them, went to the media when the school suspended them, and she eventually was forced out of her job and had to take medical retirement all because some insensitive jerks wanted to "get" her.)

So I am tentatively hopeful with the new doctors (and the new Doctor 'cause I am a Whovian). I sure hope this is a better school year. At least, so far, my administration understands. I am so fortunate because it happened when both of my administrators were new here! They could very well assume that I'm just a hypochondriacal nut job just as easy as take me at my word that I used to be a really good teacher. (No. Really.)

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Teecher,

Well GOOD for you! I totally agree with your new Doctor and it takes awhile to find the med combo that works. I did not do well on the neurontin/ gabapentin or other nerve fibro / diabetic drugs but Cymbalta was like heaven. It is expensive but since I cannot walk without a foot drop or grip anything without it I have to say well worth it.

I have said all along that this SAH crappola roles right into other neuro things so easily. Does not always matter how you got somewhere it is what you do when you get there.

Good luck. maryb

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Yeh that all sounds very positive

she felt that even after 18 months my brain is still healing ]
Well off course it is so that's great to hear a professional say that.

Sorry you are feeling down, but hun that all sounds very positive hang in there..

take care

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Crazy, isn't it, that we have to wait so long to hear simple things like, "Healing takes time; a LOT of time. I may take well over a year, but don't worry it gets better so where you are now won't be where you are in a year."

or

"We think this will work, but if it doesn't we keep going and try a new medication"

or even

"How have your headaches been? Any better?"

I've had three neurologists and one neurosurgeon and one was even a headache specialist. None of them aked me about the quantity, quality, type of pain, etc. The only time one asked about how often was when he had to do the paperwork for Botox, which requires you to have headaches at least 15 days a month, and at least one bad one a week. This was a year into our relationship.

Woke up with a doozy today which makes me cranky I have tons to do today.

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When I stopped going to my last neurologist he had menitoned botox but never ever seemed to open my chart or care about anything other than my headache. I was so depressed about this. The one before him he never even sat down. Both made me feel like a "pill" was the answer & maybe it is true but at some point I want them to acknowledge everything I was saying as a whole. It makes me shake my head in disbelief that someone can prescibe medication but never ask some important questions? I wonder if they even have at the top of the chart like your conditions?

Maryb

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I got a tattoo last week on my right arm, the side my explosion was. It says "Defy" on the inside wrist and the tail of the y turns into a flight path of a dragonfly that is on the front wrist. This is my reminder that I have defied the odds in so many ways (not just the SAH and the not dying thing), but that I continue to move ahead through defiance. It is a great reminder that I am still becoming and not broken.

I know this may sound extreme to some, and I'll probably never get a decent job or become a Japanese business man, but it is so meaningful to me. (By the way, it's not the only thing that will keep me from ever becoming a Japanese business man.)

I'm in Disneyland this week and today was a good day. Rode my first roller coaster since the SAH and while I did get a headache afterwards, it only lasted in any ouchie capacity for about an hour; a fair payoff. Yay! I love LOVE roller coasters and was so afraid that was it for me! So nice to be able to wander all around Disneyland with my honey and have fun. The only damper today is that one of my new meds really gives me a short temper (I tend to have a very long fuse). It might be from coming off the Amitryptiline since it can be used as an anti-depressent. Hope that takes care of itself soon because my husband it like, "What the HECK?!" and I have to admit, I feel the same like "Why did that upset me so much??" Even on my worst head days I'm usually pretty even keeled.

Okay off to bed1 More fun to be had tomorrow!

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  • 1 month later...

Hi,

I went to my new neurologist and had the Wellness Test and EEG done. Came back and they are both great. I even scored superior in some areas of the Wellness Test. This is all wonderful news, but, it does beg the question....What the heck happened then!!!

When I was in the hospital my sonograms they did on my brain every few hours showed normal blood flow, the scans and MRI did show the bleed and it was a Grade 1. My three angiograms showed my arteries were good and no malformations or weakness.

So, what in the world happened? I am supposed to be healthy here!! Ugh. I told the doctor that even though tests and the physical outside of me says I am okay my brain has weirdness going on. He did say it will take a long time to heal and the weirdness should subside.

I am blessed to be here, for sure. Ah, one of life's mysteries I guess. :)

iola

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  • 2 weeks later...

I had my bleed three years ago and I still have daily headaches . I'm off for a MRI on Wednesday just to check things , but all other test normally.

As my doctor says on paper I'm very healthy , but he does know different .

Lets hope they settle soon , every year I hold out for them to rack off !!

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Oh RB, God bless you but that is so depressing...

How do you handle it? Do you have anything you can share? I'm at one year 8 months now, daily chronic headaches. I get some relief when I run long distances due to endorphins. It isn't always total, but it is very welcome. I pay for it later with bad headache, but my doctor says it does no physical harm and encourages daily exercise.

I still work full time as a teacher and run a fitness business part time. Need to work, and too stubborn and hopeful to close the business I worked so hard to build.

For me, I just power through. I use an ice helmet for topical relief. I wear sunglasses indoors and keep my lights in my classroom and at home low. I carry ear buds and use them for sound relief. At work sometimes I'll go into a restroom and turn the lights off and use them in the complete darkness. Even 2 minutes will sometimes reset enough so I can go back and think again.

I think the pain is frustrating, but the MOST frustrating part is the trying to think and teach and get through the day with the black blob of goo that is the pain roadblocking everything. I can be teaching and not be able to get technical terms out (I teach IT and am very intelligent but sometimes come across as a complete nutball) out past the blob. Or I can be trying to learn something in a training and it's sort of trying to move through my ear past the blob to take hold in some area of the brain where it'll actually stick and if it touches the blob the blob is like flypaper. It'll stick to the blob and not find purpose. (You can tell I have a lot of visuals related to this blob that is my headache.)

I haven't found satisfactory pain relief. While my GP will give me low dose Vicodin, it's not very effective and there are rebound headaches and my neuro wants me to limit that to no more than once or twice a month. I have tried over the counter (I think you call it para--oh dear it just flew out of my head, wait paracetamol) but it's like taking candy. I have tried marijuana (legal here) but it is only mildly helpful. The price/relief ratio makes it not really worth it. (I never used it prior to this.)

I would welcome any ideas because I am kind of resigned to "Okay, Spidey has moved in for a good long time so I just have to live with him" (that's what I call my headaches). I am always curious how others find ways to deal. Plus it is obvious that we're not the only ones and I think that when we reach out and say "This is my deal" that we open the doors for others to share and learn.

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I know I am still early but for the daily pain, I take Firocet (sp?). It's a prescription the case manager at the Rehab facility prescribed not my neurologist. Claims it is impossible for me to still have daily 24/7 headache, even though her boss who treated me in the ICU told me and my husband I will have a headache for the rest of my life!!!!

The Firocet works pretty well knocking the head pain down to a dull throb like a normal eye strain headache. When I need an extra boost I combine it with Percocet. I don't get drowsy at all from them but if you do it might not work.

I hope you find relief that works for you! This sucks as a way of life but I guess this is our new normal.

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How dare a doctor tell you that you don't have headaches! Excuse me??? Do you not live inside your body? I'm okay with a doctor saying "I don't know why you still have headaches" but to say "You can't be having them" is ridiculous.

Yes, you need a new neurologist. And I absolutely refuse to believe that living for the rest of our lives with chronic pain is our new normal. We have to keep seeking treatment and advocating for ourselves. Maybe it WILL last forever but we can still try.

The problem with Florocet is that it can in some cases cause rebound headaches. Because of that, my neurologist does not want me to take it more than once or twice a month. (We call it Vicodin here.) The goal is to calm down the pain receptors and because the Vicodin can cause them to actually be hyper-sensitive I can't take it too often. Plus, I really can't take it while teaching. :(

You're so early in the recovery no one should be saying you should or should not be feeling this or that. My new neuro said, in fact, that there is no "timeline" on brain injury recovery and was surprised that my first neurosurgeon said my headaches would be gone in 4-8 weeks.

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The drug I'm talking about is the name brand of the Butalbital, Acetaminophen, and Caffeine combo used for migraines. I spelled it poorly... oh wait you are a teacher... "I poorly spelled it!" LOL

Yes. I do need a new doctor. It just seems so daunting to find another one. We thought it was best to stay within the NY Presbyterian hospital system but alas it's not worth it. She lacks compassion or empathy for what I'm dealing with now.

Edited by Susan McGoldrick-Meerdink
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HI all, read this thread yesterday and I have a bout of headaches again. I wanted to add I also am on that same migrane medication Susan and while I was thinking I was staying ahead of my pain I may of ended up with rebound headaches. I read again about that and if used more than 3 days in a row you can have that happen.

I tend to either let the pain get the best of me but while trying to do the "right thing" and take the medication before I had a horrible headache I think I ended up in the rebound thing again. I did not have a headache yesterday after a 3 week bout but we will see how the next few days go.

Just letting you all know that is what happens to me.

Cannot even say anything postive about a "new" doctor as it gives me a headache!

Maryb

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  • 1 month later...

Hi,

This seemed to be the best thread to ask. I went to my NEW neurologist yesterday and he is good but definitely does not have the full understanding of what I went through and going through. Only my neurosurgeon understands.

But, I did tell my new neuro about the pains in the back of my head that like to shoot through my eyes and predominantly my left eye and the constant dizziness. He mentioned a procedure he would like to do that helps people with migraines. I have not had a migraine (that I am aware) but I do have very bad pressure headaches and pain in the back of my head.

He called the pain Occipital Neuralgia and the procedure Occipital Nerve Blocks. Basically injecting you in the back of the head with a steroid. There are three separate sessions for this. Has anyone done this and found it helpful or not?

iola

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My different way.

I don't go to a neurologist anymore. I had a pmSAH so I have no need for follow up on any aneurysm either. I have found that watching my pain while living with it helps me. I take time to really delve into it during meditation. I don't try and push it away. I welcome it when meditating. It brings out the strength in me. Each huge struggle has the potential of the greatest gain. I try and welcome this unwanted guest. It is just a guest. She may overstay, but she's just a guest.

I agree, however, that it can consume my life at times. In this case, I surrender to it.

~Kris

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