Finally seen a neurologist about this aggravating symptom I've had every day for 7 years straight. She seemed to take an interest in my case, listened to my story attentively, asked a lot of questions. Also did the basic neurological exam, checked the eyes and reflexes, and apparently that was normal.
She thinks it could be (not certain) a chronic tension-type headache, and said she didn't see much in common with migraines.
Firstly, she has recommended an MRI of the brain with and without contrast, as well as an MRA. There was some mention of possible structural causes, including cysts being a possibility at my age (late 20s.) On the prescription paper for the MRI, she wrote "R/O AVM, aneurysm" which I assumes means to rule out those conditions.
She seemed to imply it's likely that the MRI will be negative, and has already proposed a plan of action for fixing the "headache." After we go over results of the MRI and I'm cleared, she wants me to take two medications concomitantly, which may, in her words, "start to break the headache." One of them is a steroid medication "Medrol", I'll get the dosepak and take it orally for six days. The other is "Skelaxin" 800mg, twice a day for six days, and then twice a day as needed.
She did make repeated use of the phrase "break the headache" and implied I might not have to take medication indefinitely, the idea being to decrease the symptoms gradually. She seemed to be optimistic that this combination of two medications will have some effect. If not, she said I could be brought in for an "in-patient" treatment, where I could be given an IV treatment. The other possibilities she said were the Lidoderm patch and also Botox.
How does this sound to you folks? I'm cautiously optimistic about this plan because I've often seen folks with chronic headaches not getting any relief from drugs, secondly, the possible side effects of these drugs worry me. Has anyone used Medrol (steroid) or Skelaxin (muscle relaxant)?
The MRI/MRA is also a concern, I seem to have this lingering fear that I might have some ferrous metal floating around in my body, I know it's irrational but who knows? I've heard that MRI machines can literally pull ferrous metal through your body, there have also been cases where metal objects near the MRI machine have turned into projectiles and injured people.
Any comments? Now that I've had the appointment and have a plan with the neurologist, hopefully I can finally make some progress on this terrible 24/7 "head pressure," but certainly I don't expect it will be easy.
Congratulations. So happy you found someone who would listen and take action. When are you having the MRI? Did she explain why they use contrast? What is MRA? Sounds like you have done extremely well.
Did you raise the concerns about the metal with the doc? I suppose fillings have metal in them and they stay in your head.
Maybe don't think about the medication until after you have done the scans. However
I suppose it is worth a shot at taking the meds suggested after all this time. The doctor would not recommend it if she did not think it would help and obviously she has used this combination before. Imagine feeling normal again, how wondeful that would be. Did you mention all your symptoms or just focus on the head pressure?
Thank you for the update. I was thinking about you and wondering how you got on. I really appreciate be able to hear all about it,
I was thinking about you and your neuro appointment...and I did get a note from gjoy about it...thank you gjoy!
So I am very optimistic for you.Your dr. seemed vey caring and educated about your head pressure.Interesting that she saw no connection between your sx and migraine.Although head pressure is a tricky thing....so many reasons that can cause it.You did have visual disturbances though and migraine sometimes causes that quite often.....but I would assume that any kind of headache could do that also.
You have to trust the dr. and go from there.You've been waiting an awfully long time to get some real help.I've had a few MRIs and had no problem from that kind of test(much safer than a traditional x-ray).You will be fine...just close your eyes and rest through it...MRI is an easy test.You can do this benit...I know you can.MRI is the best test for your sx...like your dr. said she will be able to rule in/out anything she is concerned about.
Don't worry about the meds until after the dr. gets the MRI results.Then if the dr. still wants you to take them you can ask the pharmacist about any side effects.
Also are you having an open or a closed MRI?I always have the open kind.Some places offer both,but some don't I'm sure you asked your dr. about that already.
Also the MRI will show your sinuses too and sometimes sinuses can be the cause of so many health issues....
So I am very optimistic for you.Your dr. seemed vey caring and educated about your head pressure.Interesting that she saw no connection between your sx and migraine.Although head pressure is a tricky thing....so many reasons that can cause it.You did have visual disturbances though and migraine sometimes causes that quite often.....but I would assume that any kind of headache could do that also.
I mentioned the "strange vision on waking" to the neuro. She did not seem too concerned about it. The only thing she said was migraine-like about the headache was I've been getting some motion sickness in cars for a few years now, but that tends to be mild most of the time.
Quote:
Originally Posted by scout316
Also are you having an open or a closed MRI?I always have the open kind.Some places offer both,but some don't I'm sure you asked your dr. about that already.
Also the MRI will show your sinuses too and sometimes sinuses can be the cause of so many health issues....
I forgot to ask the doctor about the open/closed MRI. But because I said I was claustrophobic to the MRI person on the phone, I'll be getting an open MRI. Do you know if the open MRI provides the same imaging quality as the closed one?
Overall I hope the plan, as it is now, is the right one. Personally I doubt I will receive the desired results any time soon, not to mention doctors don't always know how to approach an unusual case like mine.
Congratulations. So happy you found someone who would listen and take action. When are you having the MRI? Did she explain why they use contrast? What is MRA? Sounds like you have done extremely well.
I'll be getting the MRI quite soon, on February 12th. She didn't say anything about why they use contrast. As far as I know using contrast can show certain things on the MRI scan, that you can't see otherwise. MRA is a scan of the arteries in the brain. I really don't know how the procedure differs between MRI and MRA scanning, that's something of a mystery to me.
I didn't mention the metal concerns to the doc because it's probably an irrational fear. Fillings are said to be safe, as they are non-magnetic. But I'm worried that perhaps I have some debris somewhere else; it's a silly fear, but who really knows for sure?
As far as mentioning symptoms, it was mostly the head pressure that I talked about, but I also mentioned the "tight eye muscles" and the aura-like sensation I sometimes have in the morning. She appeared not to think either symptom was anything serious. About the eye muscles she asked if I have double vision, to which I said I didn't. I've had double vision in the past but it's only when I'm really tired, so I didn't think that was worth mentioning.
I never got to the IBS symptoms as it seemed she wanted to focus on the main problem which was the head pressure of course.
I think you were wise not to complicate things with the IBS symptoms. It seems doctors get overwhelmed if you have too many symptoms and can't cope. I think you have been very lucky with the doc. She sounds good.
As for the MRI I was a bit worried having that as I had a lot of trouble with my breathing at that time. I spoke to a psychologist about it and she said distract your mind by thinking about a good experience. I suggested a wonderful beach holiday we had had in Queensland. She said think about everything you did in great detail, where you went, what you saw. It did seem to help. I also started singing in my head to pass the time rather than think about it. I had a closed MRI and it was very noisy. I wonder if the open one is also noisy. Scout should know. The operator I had was good, kept asking how I was doing which helped. I am glad you don't have to wait too long for that test. Is the MRA done at the same time?
I'm glad you found a good neuro. I have had the open MRI and you should do fine. Mine was on my whole spine, and open at the head and foot. When they are done on the head alone, I believe only your chest and head are under it, and it is still open on both ends. I have also had steroids for inflammation, and did completely fine on them, they helped the inflammation in my back at the time. Is the skelaxin for pain? I have never heard of it. If you are concerned about taking too high of dosage, or both meds at the same time, I would talk to her about your concerns. If this is pain med., and you are not in much pain, she may decide you don't need that dosage. But please let her know your concerns. I am glad you are going to get some answers and hope you can finally get some relief.
Skelaxin is a muscle relaxant, which I guess makes it some kind of a painkiller, but not the typical kind. You could read about it on other websites if you have the time, and let me know what you think, as I have no experience with these types of drugs and don't know what to expect.
Ok I will do that later. I have taken muscle relaxants and they relaxed me and helped me sleep. As for helping with pain, they don't do much by themselves, but did help along with another meds.
Wondering how you got on with the MRI. When do you go back to the neurologist?
Gjoy
Thanks for asking. I just got the MRI yesterday. It was just as nerve-wracking as I expected, even though it was an open MRI and they gave me headphones w/ music to drown out some of the noise (but it's still pretty noisy.) I know a lot of people have no problem with MRIs, but personally it's something I wouldn't want to experience again.
I was somehow convinced that I have a metal fragment somewhere in my body and the powerful magnetic field was going to dislodge it. Such injuries have been documented before. This might sound laughable, but I seemed to perceive a sensation of something being pulled downwards in my lower body. I was genuinely worried about it. I got through with deep breathing but it was not fun for me. The fact that it was an open MRI made things easier, though, and I'm thankful for that.
Now that it's over with, perhaps the results will yield some progress on this "head/neck pressure" for seven years, virtually 24/7. Even if it comes out negative, at least some serious conditions will be ruled out, and I guess that counts as progress. I'll see the neurologist again this Wednesday.
I am glad you got through the MRI ok. Did you find your eyes jumped around in your head? That was my experience. I am glad you don't have to wait long for the follow up. I will be interested to hear.
So I went to see the neurologist again today, about the MRI results and the medications. The MRI w/wo contrast and the MRA are all allegedly "perfect."
The neurologist tends to think my head pressure is a "chronic daily headache with some migraine features." Apparently she thinks it could be migraine-like because I sometimes get motion sickness in cars, starting about 4 years ago. (I have also informed her about waking up with tingling and "weird grainy vision" for a few minutes sometimes, but she has never mentioned if this could be migraine-related or not, so I'll assume it's not.)
But I do have many concerns about the advice she's given me to reduce the pressure and "eventually break the headache," in her words. She's written 5 scripts for different medications. The core drug is going to be Topamax, every day preferably twice a day, for up to three months at a time or more, pending results. I'm also supposed to start with a Medrol (steroid) dosepak for 6 days only, as well as Skelaxin for the same 6 days. She wants me to take these THREE drugs--which I've never taken before--in addition to the Paxil 30mg I take for anxiety.
She has reassured me that there will be no significant interactions between these drugs and the Paxil, but I'm still worried. The next part of the plan, after the initial six days, is to take--AS NEEDED, so I suppose it's optional?--Relpax and Compazine on an alternating daily basis. It goes without mentioning, if all these drugs have generics, I'll have to get them generic, because I can't afford name-brand.
Has anyone here had experience with Topamax, if so, good or bad? What about the poly-drug use plan? Has it been safe and effective for you?
I'm typically very skeptical about the so-called safety of taking any drug, but now I've gotten several of them thrown at me, some of them to be taken 3 at a time. I suppose there is no other way to treat "chronic daily headache" but I'm not sure if I have the courage to go through with this plan, seeing as I'm easily bothered by side effects.
Hi Benit, I don't blame you for being skeptical about taking all those meds. One thing that stands out though is she keeps saying tension headache. Tension causes the muscles to tense up. Have you ever had any of your muscles or " trigger points" checked? I would suggest having this done before taking a bunch of meds. They can help in the short term, as this is what the doc put me on also years ago, for similar symptoms, the steroids helped with the inflamation, so my symptoms went away for awhile, then when I was done with them, my symptoms came back full force. My problem was in my upper back, shoulders and neck muscles. Remember, this is a major source doctors do not think to check with these symptoms.
Thanks for your response. But you may have misinterpreted something in my last post. I mentioned that my neurologist called it "a chronic daily headache with migraine features." As well, I asked specifically if it was a tension-headache, and she seemed to think it was more of an atypical headache with some migraine features. In other words, she hasn't come up with a clear diagnosis as yet. I wonder if she'll be able to do so based on how I respond to specific drugs.
About getting trigger points checked, do you really think a neurologist would do this? My impression is that a lot of specialists don't bother with anything that might be called an "alternative therapy," etc, perhaps because of time constraints.
Hi Benit, you mention tension in your first post. Neurologists and some orthos are about the only specialists who know what trigger points are. It is not an alternative therapy. It is something they forget to check as the cause of a problem. It is certain areas on a person, that when pressure is put on them, brings on the symptoms they are having a problem with, which means that is the source. For example, the last time I had my problems, was just last year, I saw an ER doc who argued with me saying neck and upper back problems wouldn't cause my symptoms, then I saw another doc, do not remember her specialty who argued with me also, neither checked me where I was having symptoms. I then saw my doc at the spine clinic, he checked me finally, and asked me what worked before for treatment, and referred me. I went to physical therapy again, and they now have a new treatment that is very gentle, that releases the tension in the muscles and taking the pressure off the blood vessels, which is what causes my symptoms. I know it is hard to believe for some people, because they expect to have all kinds of trouble with their neck in order for that to be the problem, yet many times, they have either had trouble in the past and let it go, or have neck aches that come and go and just forget about it thinking nothing of it, this is what the guy had, who was mis-diagnosed with mieneres disease. He spent a year with this diagnosis, and nobody thought to check these. He went back to his neuro and specifically asked to have these checked, and found his symptoms came on strong then. The neuro then sent him for treatment. It is not a new problem, but seems to be overlooked by many doctors. I hope the meds help you. All I am saying is, it cannot hurt a person to have these areas checked, when the doc is not even sure of the cause, and treating you for something they are not sure about.
It is good to hear your brain is perfect. I wonder how many people they can say that to. No MS, no tumours, no sign of stroke and no aneurism. That should be a relief.
I have thought about this a lot. You will need to look at the pros and cons for each and decide on the best path for you. Only you know how bad you feel and how desperate you are for help. I know your funds are limited and that does limit your choices.
It is great you have found a doctor who is willing to help. They are hard to come by. Unfortunately what she knows is western medicine, which relies on dispensing drugs to alleviate symptoms. It does not look for the underlying cause of symptoms. To keep her on side you may need to go along with her recommended treatment. Did you ask how long do you need to take these drugs to see if they work? I know you mentioned three months but surely you would see improvement before that. Originally it sounded like a short term thing. If they don’t work, I wonder if she will she be looking for something else, or will she put it down to anxiety. I may not have got into the mess I am in if I went along with doctors advice on meds. Mind you I would probably be a zombie in a psych ward.
I have checked the main meds and side effects, also patient comments on each. Some people think they are miracle drugs, others find them their worst nightmare. You will only know if you try them how you will react.
Now you have the scripts you don’t have to rush in to start. Maybe you should think about Kaseys idea on the trigger points. A myotherapist specialises in that. It would be logical if your muscles, tendons or ligaments in your neck are inflamed, as you have said you use the computer too much. Maybe you should do some reading on it. It seems to be considered a natural therapy. The doctors I see wouldn’t believe it, however if it works it doesn't matter.
You have some decisions to make. I am happy to discuss it any time, if that is a help. I will be away from the computer for a few days this week, as I was last.
Good luck
Thanks for your continued interest in my case. I've been having a lot of conflicting thoughts about the plan, and can you believe after all this, I'm stuck on picking up the phone and calling the neuro's office to ask a question. The question I want to ask is if I can just start with the steroid and the muscle relaxer, and once I run the 6-day course with those, then I'll start the Topamax. I just think it's not wise to jump in with all three when I've already got Paxil in my system. SO... that's the question I need to ask, and I find myself stalling.
Perhaps I'm worried that the doctor will find it odd that I didn't start the medications yet. I don't know, but this makes me anxious. I need to make that call.
