gdomaracki Posted October 2, 2009 Report Share Posted October 2, 2009 Hello! So I'm off to try another experimental treatment suggested by Dr. Goodkin. I've read up as much as I could about cranial manipulation, but to be honest there really isn't a whole lot out there. And as my appt gets closer (MONDAY) the more nervous I am getting. I guess its better to try and know that it either works for me or it doesn't, than to not try and never know. I am so desperate for some kind of relief from my symptoms. I was wondering how many of you have tried cranial manipulation or have thought about it & your thoughts and experiences on this form of treatment.Take care & God bless Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted October 2, 2009 Report Share Posted October 2, 2009 Hi Blondie,What do you consider cranial manipulation? I am asking because I have been getting craniosacral therapy for two years, and I think this may or may not be what you are referring to. I just wrote a long note on it to one of the other forum members about my experiences, and I would to happy to forward it to through PM if this is what you are referring to. ~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 3, 2009 Report Share Posted October 3, 2009 Hey Blondie-Search that & integrative manual therapy on this site. My son's also had very good results with an osteopath. Maybe search that as well. I think all are closely related. Nothing to be nervous about. It looks like voodoo. Depending on your practitioner, he may "read" your body by lightly laying hands on you & treat you similarly. It is painless and really helps. My son and I had effects that lasted for a relatively short duration with integrative manual therapy & longer lasting results when the osteopath did craniosacral therapy. Google Dr. Robert Fulford. He taught the osteopath that Mack sees.Best of luck. Let us know how it goes. Julie Quote Link to comment Share on other sites More sharing options...
Steph06 Posted October 3, 2009 Report Share Posted October 3, 2009 Hi Blondie,Dr. Goodkin is my doctor as well. Did he refer you to Dr. Bellew in Delaware? If so, you have nothing to worry about, he is a great doctor. I went to him several times but have not seen him recently. I'm not sure if it helps or not because I did not go consistently. I just told my husband that I was thinking about going back to Dr. Bellew. The atmosphere is very relaxing. Good luck and please let me know how you make out.Steph06 Quote Link to comment Share on other sites More sharing options...
carinara Posted October 3, 2009 Report Share Posted October 3, 2009 Before my Diagnosis i travelled 4 hours every 2 months to see a very good craniosacral therapist. I could see an improvement short term. I wish the therapist wouldnt live so far away, i havent seen her since my Diagnosis in 2007. I really enjoyed the times i had craniosacral therapy. Whilest she "worked" on my body she always made me go on a "mind journey", that way we worked with the "inner child". I really miss going there. Quote Link to comment Share on other sites More sharing options...
gdomaracki Posted October 3, 2009 Author Report Share Posted October 3, 2009 Broken Shell-All I know is that its called cranial ostopathic manipulation. I'm not sure if theres a difference between craniosacral and this or if they are the same thing.But either way I would love to read about your experiences from it, so feel free to PM me Thanks so much! Quote Link to comment Share on other sites More sharing options...
gdomaracki Posted October 3, 2009 Author Report Share Posted October 3, 2009 Mack's Mom-Thanks for the information! I'm always nervous when it comes to new therapies just because of all the negative effects I've had from the past ones. But I'm definately trying to keep a positive outlook on this one. What exactly is the difference between integrative manual therapy and craniosacral?I will definately keep you posted. Quote Link to comment Share on other sites More sharing options...
gdomaracki Posted October 3, 2009 Author Report Share Posted October 3, 2009 Steph06-He referred me to a Dr. Leaster closer to where I live in PA. Supposedly this osteopath is really good also, as he has a 3 month waiting list.I figure if anything, they will help me to relax and help realize stress & tension. Quote Link to comment Share on other sites More sharing options...
Steph06 Posted October 3, 2009 Report Share Posted October 3, 2009 Let me know how your appointment goes. I wish you luck! Take Care Quote Link to comment Share on other sites More sharing options...
dsdmom Posted October 3, 2009 Report Share Posted October 3, 2009 I have tried craniosacral therapy and it has not yet helped. It has made me have terrible ans flares each time I have had it done - they tell me this is good. But since I was bedridden because of it, I can only think I am super super sensitive and it may take me a long time to see any benefit from this. Since I don't ahve tons of $, this is out for now! Quote Link to comment Share on other sites More sharing options...
shannabanana Posted October 3, 2009 Report Share Posted October 3, 2009 I had craniosacral therapy as well as mayafacial (sp) therapy and I enjoyed, and benefited from both of them! I wish I could still go, but unfortunately the therapist i was seeing for these treatments works at a children's hospital and once i turned 19 i was booted! haha. good luck at your app. and i hope all goes well!-Shannon Quote Link to comment Share on other sites More sharing options...
mountain girl Posted October 3, 2009 Report Share Posted October 3, 2009 I do not know anything at all about this cranial manipulation, but what caught my eye was Dr. Goodkins name. I have an appt with him mid Oct. and will be traveling 5-6 hours to see him. I have not had succcess finding a good pots dr locally. From what I read from others it sounds non invasive so thats good. I am going to try to google it to read up on it more. Good luck and let us know how it goes. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted October 4, 2009 Report Share Posted October 4, 2009 Hi,I am not really familiar with what it is that the osteopath is going to do. I did want to say though to watch any chiropractic type treatment if you have EDS or may suspect EDS or other connective tissue disorder. It sounds like they are talking more of a craniosacral therapy, but if it is adjustments etc. at the base of the cranium/skull and the vertebrae of the spine that is a different thing. If you are unsure about the treatment, ask them to clarify what they will be doing. Even ask for any info they have written up on it. It would also be ideal that there would be some evidence written up to back up their treatment, but that does not always happen if it is a "newer" or untested treatment. Also, make sure they discuss the risks and benefits of the treatment with you. If they aren't comfortable sharing much info with you, then that may say something...Let us know how it goes! Quote Link to comment Share on other sites More sharing options...
heathmcev Posted October 5, 2009 Report Share Posted October 5, 2009 I'm guessing your appointment is today - and I hope it goes well for you. I live in DE and have been going to another osteopath here for craniosacral therapy for 2 years now. If your experience is anything like mine, it's very subtle. "Manipulation" is almost too strong a word cause it makes it sound so forceful, when it's really very gentle. For the first 2 months of treatment I didn't experience any change myself, but stuck with it at the suggestion of several people - and because the feedback the osteopath was giving me sounded accurate to how my body felt. Then all of a sudden I started to feel a shift, and since then I've been going every 2-3 weeks for treatment. I find it the most calming thing - and it's also the only thing that can really relieve my migraines! I think our POTS bodies are so easily upset by stimuli... so if you find something soothing then it's worth it. I refer to craniosacral as "re-booting the system". Good luck!! I hope you find something helpful in it. Quote Link to comment Share on other sites More sharing options...
mountain girl Posted October 29, 2009 Report Share Posted October 29, 2009 I just saw Dr. Goodkin yesterday and he recomended the cranial manipulation for me as well. Since I live in Va. he went on the internet to the Cranial Academy.com and found a osteopathic dr where I live. He said the thing to look for on the web site is that they do 100% manipulation as opposed to a lesser %. I have an appt on Monday Nov. 2 to talk to the osteopath and have it done. Dr. Goodkin seems to think he has seen people have good results from this and said Dr. peter Rowe from John Hopkins also is recomending this type of treatment. He also gave me a prescription for Midodrine 5 mg three times a day. I am a little scared of a new med. Any experiences? Quote Link to comment Share on other sites More sharing options...
daisy Posted October 30, 2009 Report Share Posted October 30, 2009 Can someone tell me what cranial manipulation is? I live in DE and am only about 20 min. from Dr. Bellew - he used to work with my PCP but I didn't know he was familiar with POTS or had a potential symptom treatment....... Quote Link to comment Share on other sites More sharing options...
mountain girl Posted October 30, 2009 Report Share Posted October 30, 2009 I have not actually had it yet, my appt is Monday Nov. 2 but I googled it to try and understand it. I can't say I really understood it after reading it but google it and see what you get from it. It did say some doctors do not believe it to be helpful, but since Dr. Goodkin and Dr. Rowe both have seen results from it I am willing to try. It is not invasive and somewhat like physical therapy if I understand , that if something in the body is out of "place" it is manipulated back in. I will try to post another reply mon after seeing the dr who does this. Quote Link to comment Share on other sites More sharing options...
HoudiniCat Posted October 30, 2009 Report Share Posted October 30, 2009 I?ve been a patient of Dr. Bellew?s for 2+ years and he has treated and helped many, many POTS patients. I also was referred by Dr. Goodkin. At my first visit, although he knew I had POTS, during the initial exam/treatment, he was telling me what my most bothersome symptoms were before I was telling him. His cranial manipulation technique is a combination of exam and treatment where he identifies abnormalities/misalignments of the brain, spinal cord, tissues, bones, nerves, fluids etc. It?s a gentle relaxing head massage while you?re lying down in a dimly lit, quiet room with relaxing music playing. Once he identifies things that are ?out of whack?, he gently maneuvers your head/neck area to try and bring things back to normal. For me, it?s a totally relaxing experience and I feel his treatments have been an essential component in my POTS recovery.More on cranial osteopath - www.cranialacademy.org Quote Link to comment Share on other sites More sharing options...
kayjay Posted October 30, 2009 Report Share Posted October 30, 2009 I also live very near this doctor- Is his treatment more effective than massage or yoga? Quote Link to comment Share on other sites More sharing options...
mountain girl Posted November 6, 2009 Report Share Posted November 6, 2009 Wanted to let everyone know how the cranial manipulation therapy is going. Dr. goodkin did say I may feel worse before better and he is right. I feel less functional now, but I have only been twice, and the second time was not as bad as the first. It is relaxing during the treatment, like a gentle massage, but after I have felt very tired, nausea and more dizzy and lightheaded. I went Mon and Thurs of this week and am to go back again this coming Mon. Hopefully each time will be better. The first eve after tx, I had trembling and cring spells. This morning after yesterday being a tx day I have felt more chest heaviness and a "fluttering" feeling with my heart. It is hard to stick with something that makes you feel worse, but I do want to give it a chance. Anybody else out there who has this experience? Quote Link to comment Share on other sites More sharing options...
HoudiniCat Posted November 6, 2009 Report Share Posted November 6, 2009 In the beginning, I had the same experience of feeling worse after each treatment. When I would first stand up after treatment I felt like I was totally drunk. Would sleep in the car the whole ride home. And always scheduled my appts. for Thursdays so I could take Fridays off (plus weekends) to rest. I only went once a month as I felt it would take me days to recover and then a few weeks to get the full effects of the therapy. I know some people who?ve felt significantly better after 2-3 treatments but honestly, it was a slow process for me. My family was very skeptical and swore he was making me worse (not better) but since nothing else was really giving me the results I wanted I decided to stick with it. Quote Link to comment Share on other sites More sharing options...
mountain girl Posted November 6, 2009 Report Share Posted November 6, 2009 In the beginning, I had the same experience of feeling worse after each treatment. When I would first stand up after treatment I felt like I was totally drunk. Would sleep in the car the whole ride home. And always scheduled my appts. for Thursdays so I could take Fridays off (plus weekends) to rest. I only went once a month as I felt it would take me days to recover and then a few weeks to get the full effects of the therapy. I know some people who've felt significantly better after 2-3 treatments but honestly, it was a slow process for me. My family was very skeptical and swore he was making me worse (not better) but since nothing else was really giving me the results I wanted I decided to stick with it.Dear HoudiniCat, Feeling drunk or hungover is a good way to describe it. I am going to try to give it a several months if I can. This osteopath is very familiar with cranial manipulation but of course had never heard of pots.My husband and good friend are actually encouraging me to stick with it, because it is so hard to do something that makes me feel worse. I am off today, but have to work the weekend, so I am hoping I can tough it out. I thought maybe the theory was to go more often in the beginning to help the body to adjust to the changes, because he said if I feel better after tx, we might reduce to once a wk. and so on. Sometimes I wonder if I should just be happy where I was at, because at least I can work part time, but I want to be the best I can be and lead as normal life as possible and I'm not there, that's for sure.Thanks again for your helpful info. Having this web site for support and info has been a awesome. Quote Link to comment Share on other sites More sharing options...
gdomaracki Posted November 7, 2009 Author Report Share Posted November 7, 2009 So I went for my first appointment about a month ago and wanted to let you all know how it went.The first 24 hours I was VERY sore and extremely tired but within 48 hours, my achiness had subsided and I began to feel SOO much better.Overall my body felt great, no more neck pain or back pain. And no more headaches every day. I haven't been back yet because the guy I see is booked two months in advance, but hopefully I'll be able to get in soon.I believe that this therapy is going to help and will keep you guys posted. Quote Link to comment Share on other sites More sharing options...
mountain girl Posted November 12, 2009 Report Share Posted November 12, 2009 I have been for a total of three cranial manipulation appts and felt worse as I said the first, second one not quite as bad, but the day I was scheduled for my third one I was so dizzy and felt like I would pass out the whole day. My daughter drove me to the appt and I immediately felt better after.That was on Monday. Today is Thursday Nov.12 and I felt not too bad, but not good. He really seems to know what he is doing, and Iam due to go back again on monday. It seems like it is a process and different practitioners seem to do a different time schedule, or maybe it depends on the pt. too. So I started on a Thurs. and then Mon and Thus the next week, now trying to go til next Mon. He is able to press on my neck and head very gently and bring on the trembling and nausea symptoms, and if he brings on those symptoms he says he needs to adjust more slowly and somehow differenty, but it worked short term. Dr. Goodkin said it could take 6 months to see improvement. I feel like this could be a break through in pots treatment. Obviously it is not widely used by what I see on the website, but I am hopeful. Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 13, 2009 Report Share Posted November 13, 2009 So I went for my first appointment about a month ago and wanted to let you all know how it went.The first 24 hours I was VERY sore and extremely tired but within 48 hours, my achiness had subsided and I began to feel SOO much better.Overall my body felt great, no more neck pain or back pain. And no more headaches every day. I haven't been back yet because the guy I see is booked two months in advance, but hopefully I'll be able to get in soon.I believe that this therapy is going to help and will keep you guys posted.Blondie-WHY were you sore? Was your practitioner actually manipulating you roughly? The treatments I have seen have barely involved a gentle "laying-on" of hands. Just curious if you had a different type of treatment?Julie(Another Blondie- just highlights really ) Quote Link to comment Share on other sites More sharing options...
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