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Brain & Nervous System Disorders Message Board

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I've already stopped Topamax--for the time being. The main reason is the "rare cases" of Topamax causing seizures for people who have been on the drug for a month or more. While the literature does not list seizures at all as a side effect (except in withdrawal), an internet search finds a lot of cases. Call me a wimp, but I'm not risking a seizure. My brother's epilepsy was *worsened* by another anticonvulsant drug, Keppra.

I see the doctor again April 15th. Possibly she can persuade me to take that drug again--after I discuss the concerns about epilepsy--or not. I'm wondering if there might be another headache preventative drug that doesn't affect the seizure threshold as much. I just have this inner-voice telling me not to continue with Topamax. My inner voice is not always right, but you never know.

Gjoy, have you taken Topamax or another anticonvulsant drug for your head pressure? Which meds--besides antibiotics--have you tried for your symptoms?
Hi Benit,

I have only taken the antibiotics, which seem to work for the pain I get to some degree behind my ear, but the head pressure is always there, to a greater or lesser degree.

I have not taken anything else. A few drugs have been suggested, but because my symptoms are so varied no-one is sure what causes them. They say you might like to try...... If someone said this will work for certain, without side effects I would go for it. But it is not that simple. I am trying to make sure I do the best i can with my diet and by taking the suggested supplements.

I have seen another natural doctor this week ie is a man who trained in medicine, but decided there were better ways to make people healthy. My diet is still fruit, vegies and meat or fish, but also I am off foods with salicylates. Salicylates are naturally occuring aspirin like substances that are present in lots of fruits and vegies. He said some of my probs resemble aspirin poisoning. Well see. I let you know if my head improves.

Do you think the doctor understands your problem, ie head pressure as opposed to a headache? You can still have a head ache as well I sometimes find, but the head pressure is constantly there. I wonder she has actually treated a person with the same problem.

Are you any different for having taken the steroids and muscle relaxants?

Hi Benit,

Do you ever have headache with the head pressure? For me sometimes I get headaches in various parts of my head but the head pressure still stays. Yours must be different from mine.

I have been to a therapist 3 times now who practices neurostructural integration technique. It works on pressure points all over the body. It was quite relaxing but did not really help the head pressure I'm sorry to say.

If you are not keen to take drugs, maybe you should look into natural remedies. My in-laws take dozens of drugs each day. They are still very unwell. I don't want that to be me.

I hope the neuro has some more ideas at your next appointment,

Hi Benit,

Strangely I was just looking for your thread to see how you got on. Did she suggest any other ideas if this doesn't work? Do you see her again? If she said you can stop suddenly without side effects why not try it? There seems to be little alternative at present.

I am booked in to have the drainage tube in my right ear. The ENT said it should equalize the pressure which is still wrong. I hope it fixes my head as well.

I have been seeing another natural doctor who has taken me off more foods that I might be intolerant of. I know you have digestive problems, so if your digestion is poor your whole system becomes toxic. Maybe this is causing your head pressure. If that were the case it would not matter how many drugs you took, they would not fix it for good. If you are interested I will pass on some of this doctors knowledge in more detail.

Your diet has helped, but has it decreased the head pressure?

Probably the reason I'm not trying all these things like you are is, for one, my situation may not be as debilitating as yours; I don't like change and I'm very stubborn; I tend to lack the motivation to do things unless I'm certain it's going to help.

The drugs, while risky, carry some guarantee of relief *if* my issue is a headache; the neurologist says if the drugs work, eventually I can get off all of them and my headaches will be "less" in the longterm. I'm tired of wasting time. It seems as if the dietary change may take even longer than medication to show results, and there isn't really any guarantee.

I hope you don't take any offense, I'm not criticizing your choice. I'm just a lot less motivated than you are and maybe more willing to take shortcuts.
Hi Benit,

I'm sorry you are not having more success. Has the neurologist ever said what is causing this chronic headache? Do you have your eyes checked regularly for example. Seems to me the treatment is for the symptom and not for the cause. Good on you for trying.

One good thing is if the drugs make you feel lousy you can appreciate not feeling like that all the time.

As for the botox I wouldn't be keen. Reading about it is very off putting as it is a toxin, ie a poison. My aunt was having botox injections in her voice box. They gave some temporary relief but she had to have them every month. She was elderly and recently passed away. She was very unwell for the last 6 months. They didn't seem to know why. May be side effects. Who knows. She did have a bad heart though.

I suppose the neurologist is continuing to take you seriously so that is good. I wish her ideas were a little less drug orientated. You don't think you should try a chiropractor or some other manipulation. Sounds a bit less drastic.

I am not really one to give advice because I am having no luck myself with relief of the head pressure. Some days it is worse than others and I do not know why. If your drugs work don't worry I'd be lining up for them too, regardless of what I say. Fortunately some of my other problems have improved and I have more energy now than I have had in a very long time. It's a great feeling.

I am meant to be seeing another neurologist myself soon. The doctor was going to refer me and I have to wait to hear about an appointment. Thinking I should make some enquiries as it was discussed 6 weeks ago and I am not sure that the referral was even sent. The neurologist is head of neurology at a big teaching hospital. It is said he can think outside the square. I am a bit over it. But they may come up with something that helps us both. You never know. May be I should pursue it.

Good luck with it all and keep us posted,

hello benit

sorry to have been gone for so long...I feel so badly for not responding to you & gjoy.

I'm with you & gjoy on not being a fan of prescription drugs........never had much help from any medicine I had to take.Like for instance it was erythromycin that messed up my already low B12 back then.Drs. never tell you about all the complications the meds can have to go through all that and then find out on your own what is wrong...that seems to be the case for so many of us.

Neuros use Topamax for so many symptoms so it must be a go to medication to them.I never tried it,but one neuro suggesred depakote to me for severe sinus headahes.....I sad no thanks.They use depakote for people with psychiatric problems too.......makes me wonder if drs. are just guessing about what to do for patients.

You remember when I told you about people getting head pressure from paxil?Did you mention that to your neuro?If not you should...mayne changing to a different antidepressant is what you need....I urge you to really consider that.

I have missed discussing health issues with you & gjoy,but I have retreated to my protective cocoon for months now...I know I am having a serious pity party for myself,but I just feel too badly to do anything lately.I am having some frightening health issues presently and I don't know what I can do to get help.It's like nobody know the feeling.

My GP dr. is leaving the health group I was going to...I will miss him,but he never followed through on dx-ing my surprise there.

Feel like something is pulling in my upper abdomen which in turn makes my heart beat funny.I can't grasp anything tightly or it makes the pulling in my abdomen act up too.I noticed my upper spine feels achy too.

You could try going to an ent dr....they can help with head pressure...I think neurologists are not very helpful unless you have a problem like MS and such.They really aren't interested in helping patients who have a decent MRI.

I suggest you research the side effects of long term usage of paxil.

gjoy I am so sorry I've been away so long..I have not forgotten about you..I just have been feeling too awful to communicate...I just play those silly games on that site to keep my mind off of my health issues.

[QUOTE=Kasey443;4794324]Benit, when a steroid pack kind of works a little, that tells me the problem is in the muscles, as the steroids take care of the inflammation. Here is how this works ( I have been through this same thing ), head pressure that never let up, no doc could figure out the problem, steroid pack helped a bit and for that time I was clear headed and feeling better, once I was done with the pack, all my symptoms came back. The source was in my upper back, shoulder and neck muscles. You really should have these areas all checked, as if this is the cause, the cure is simple. Most docs do not think to check these areas. Some call them trigger points. A neuro knows where these are. The treatment is physical therapy. Not exercises, but you are put in a position that releases the muscles spasms. I just went for treatment for this problem again. The muscles put pressure on the blood vessels going to the brain, and affect the blood supply, causing pressure, the feeling out of it, memory, concentration. Please have this checked, as I think I told you about this before, and you hadn't had it done yet.[/QUOTE]

You've mentioned this quite a few times now. I appreciate your persistence, as I tend to ignore advice that might be problematic or lead me to a different course of treatment, out of apathy or skepticism.

First thing is, I don't think I got *any* relief from the steroid pack. If I said so before, it was due to wishful thinking.

But really when you break it down, am I supposed to ask the neurologist to "check my trigger points"? If this is suspected, then where do I go next... do they refer me to a physical therapist?

Nonetheless it seems with my current neuro, it is all based on medication or expensive treatments. For example last time she said to take Depakote, if it doesn't work, then think about Botox. I'm beginning to realize I hate taking medication, so Botox is more realistic for me, despite various concerns. I'd much rather find some other way to treat this problem, but you also have to remember, doctors don't often like "Internet patients" or patients that think they may know better.
LOL, you are very right about doctors like liking " what a person reads on the internet". Your own neuro can check these, but I would not call them trigger points, it looks like you know more than they do. I have checked myself, since I knew where to check, because I just had the problem again in the last few months. Or you can have somebody press these areas for you. It is similar to a firm massage, pressing firmly on certain areas, to see if they are tender, or bring on symptoms. One is right at each shoulder blade area on both sides of the back, this area is different than your shoulders, its right next to the area where your shoulder blade sticks out, there is a muscle there that is a main cause of problems with the neck and head. If it causes alot of pressure or an ache, just pressing, this is a symptom of a problem there, another is squeezing your own shoulders firmly on each side, this would cause an ache, or symptoms, and pressing firmly on the neck muscles on each side like giving yourself a massage. All I had to do was try to massage my own shoulder, and it was hard as a rock, the more I pressed, the more it aggravated my symptoms. One of my main bothersome symptoms was head pressure. the symptoms are always referred to areas connected to this, which is the neck and head. You could ask your neuro. if she would please check your muscles in your upperback and neck to see if maybe physical therapy would help, thats all I can think of. Or you can check them yourself. If you find a problem, ask your neuro to check them. Remember to press firm, some muscles are deeper. Good luck to you
You could ask your neuro. if she would please check your muscles in your upperback and neck to see if maybe physical therapy would help, thats all I can think of. Or you can check them yourself. If you find a problem, ask your neuro to check them. Remember to press firm, some muscles are deeper. Good luck to you[/QUOTE]

We briefly touched on this last time. I asked if stretching would help, she said it could help, and mentioned hot or cold packs. But then she said the relief would only last for a half hour, as opposed to something longterm like Botox treatment. I have the pressure in my head and neck, and apparently the injections cover both those areas.

I thought I would add, after pressing on the area around both shoulder blades, the head pressure got worse and I also got a low-intensity headache along with it. I wonder if this means something...?
Gjoy, ty for your support. I am only persistent when the docs cannot figure it out and a person's symptoms are aggravated when these areas are checked, and it is obvious this is the source. I hate to see anybody suffer needlessly going from doctor to doctor and put on a bunch of meds. This is what happened to me years ago, 6 months of trips to the doctor and meds, all to find out it was in my muscles. Please get these areas checked Benit. The therapy is called counter strain. It is a new therapy that is not painfull at all, so I actually didn't think it would work last time I went, it worked wonders at releasing the knots in the muscles, and is the best therapy I have had over all these years. I have lived with this problem for 11 years after a car accident, and my symptoms will come on with no pain, ( just head pressure, light headedness, feeling not with it etc. ) so it takes me awhile to realize the problem, I check myself and go for therapy, a few sessions and I am done.
Hi Benit,

I am on your side as far as keeping the appointment. This doctor at least has listened to you and I know how hard it was to take the step of getting an appointment in the first place. I think it is best if you keep on good terms. If I were she I would admire your courage in going to the appointment and admitting you haven't had the meds. I would also say you are not interested in botox injections. You never know, she may have talked to someone or read an article about someone like you and have a different idea. If you part on good terms, you can always go back if she still wants you to go down the drug path. I don't know if a neurologist has the key. Maybe you are on the wrong track. Your head is part of your whole body and if your head pressure is fixed by medication, I would imagine you will still have other problems. What you want is an overall view and to fix the whole lot. Maybe the neuro will refer you to an allergist or a physical therapist. Maybe you should ask you primary care physician if you can be referred to an allergist as Scout suggests. I have learnt it is not a good idea to have all the eggs in the one basket. You waste too much time. With medical mysteries like us, you have to explore all avenues as the doctors just don't know.

As for being patient, I think you are very. You have put up with this for so many years and are still hanging in there. All of us deserve medals for our patience.

Good to hear you sounding more positive Scout. Thanks for the support.

Thank you Kasey for your advice. I will suggest the possibility of the muscles in my back causing my problems and see what the neuro says.We are all going to be winners one of these days, just like you Kasey, I am sure.

That's no surprise, did the neuro even check your muscles? I have had a few docs argue with me without even checking me, 2 in a row in fact, one prescribed valium lol, guess she thought it was all in my head, well my symptoms were all in my head lol, pressure, light headedness, dizzy spells, off balance feeling etc. The 3rd one finally listened and checked me, and sent me to PT. But I just don't get why some docs can completely overlook what a patient is telling them. Oh, and I just read the other day, that doctors still have a hard time accepting trigger points can cause these symptoms, yet chiropractors and physical therapists know about it and believe this is a source of these symptoms, I suppose from all the patients they treat for this and see where the problem is coming from. It is very frustrating not to be heard, or listened to, sloughed off, without even being checked, since they decide in their own mind it just can't be, then go on to perform expensive tests without even checking what is sometimes very obvious. I believe other things should always be ruled out first though, because this is not always the source, but it is well known you start with the easy and if nothing is found, the docs then start looking for other things with tests. They seem to miss the deep muscles constantly, and it's so easy to check.

I a 24 year old male, sit at a desk job all day. I've followed your forum for a while once I developed the same issue of a constant head pressure for about 14 months.. I've had all the tests as well, you name it, I did it. Including sinus surgery, wisdom teeth extraction etc....

I haven't read thru all ofthis forum but I'm sure you are willing to try anything. I've been focusing on a constant posture change for the past two weeks and have felt better than I have in the past 14 months.

I know it sounds too simple, but what have you got to lose? Try this, sit/stand up straight as if to push the middle of your neck as far back as possible. Keep your chin down and keep it there. All day, think about it constantly. It should be uncomfortable... Does the pressure in your head change at all? If so, then this clearly has an effect. Give it a shot, at least you don't have to waste more money going to the docs right? Good luck...
I think a bad neck/posture is one of the 3 or 4 most likely causes for the head pressure. I'm a very stiff, anxious person to begin with, and I use the computer far too much, probably in the wrong posture. TMJ is another possibility, my jaw snaps to the left, and I clench teeth without knowing.

I could see the GP again and ask for a referral, but I have trouble with his questions. He often asks about career and how things are going, and so on. I've had to make up some things here and there--I'm afraid if he knew the whole truth, he might not be so willing to help me. My situation is just that bad.

I do see the psychiatrist again on February 21st. Last time he said he would refer me to another neurologist if my current one didn't work out. I could ask about a physiotherapist, but I'm not sure he's knowledgeable in that area.

thanks again for your support,
Bill Z.

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